DYING, ILLNESS, AND AGING WITH GRACE - Coping with chronic, rare, and invisible diseases and disorders (and disabilities)

Selected Works

Quick Links

(Resources on illness, addiction, death and dying, loss, grief, and positive aging)
• Index of comfortdying.com site
• Index of blog posts

• Writers and Editors website
• Index of Writers and Editor website (writersandeditors.com)

• Pat McNees site (patmcnees.com)

About Pat and topics specific to her, her work, and her interests

Coping with chronic, rare, and invisible diseases and disorders (and disabilities)

• Rare and undiagnosed diseases
(links to organizations and research)
• Coping with chronic illness
• Coping with invisible chronic illnesses
• Orphan drugs: the good, the bad, and the greedy
• 'Right to try' laws, early or expanded access programs, compassionate use of experimental drugs (pro and con)
• Managing chronic pain
• Managing your health, pain, medications, and health care costs
• Culprits in the opioid crisis
• Books about coping with chronic illness
• Memoirs of coping with chronic, rare, or invisible diseases or special health problems
• Finding helpful medical information online for people with rare diseases
• Support groups for patients with chronic, rare, and invisible diseases
• SPECIFIC CONDITIONS

Some conditions for which there are few entries aren't listed here but may be found in alphabetical order.
Acne
ADHD, ADD, and other problems with attention
Addiction, including alcoholism (as Substance abuse)
Allergies (see also Autoimmune diseases)
ALS (Lou Gehrig's disease, Amyotrophic lateral sclerosis)
Alzheimer's and other forms of dementia
Aneurysms and AVMs
Alopecia areata ("spot baldness")
AphasiaArthritis
Asthma
Autoimmune diseases
Autism spectrum disorders (including Asperger's Syndrome)
Back pain, chronic Black lung diseaseBlindness, macular degeneration, and other vision problems and disorders
Blood disorders
Brain injury
Camptocormia (aka 'bent spine syndrome' or cyphose hystérique)
Cardiovascular disease (heart and vascular conditions and care)
Celiac disease
Cerebral palsy
Charcot-Marie-Tooth Disease Chronic fatigue syndrome
Crohn's disease
Cystic fibrosis
Deafness and hearing loss
Deep vein thrombosis (DVT)
Dementia, non-Alzheimer's types, including frontotemporal and Lewy body(in another section of website)
Diabetes
Digestive disorders
Diverticulosis and diverticulitis
Dysautomnia (and POTS)
Dyslexia
Eating disorders
Eczema
Ehlers-Danlos syndrome
Endometriosis
Epilepsy
Eye diseases
Fibromyalgia (FMS)
Fungal infections, including Candida auris
GERD & Laryngopharyngeal Reflux
Gerstmann-Sträussler-Scheinker disease
Glaucoma
GoutGraves' disease
Guillain-Barré Syndrome (GBS)
Hashimoto's disease (Hashimoto's thyroiditis)
Hearing loss and deafness
Heart disease (on a separate page)
Hepatitis A virus
Hepatitis C virus (HCV)
HIV/AIDS
Human papillomavirus (HPV)
Huntington's disease
Inflammatory bowel disease (IBD)
Invisible chronic illness (ICI)
Kidney disease, kidney failure, dialysis, kidney transplants
Late-stage Lyme disease (also called Chronic Lyme disease and late-stage neuroborreliosis)
Lead poisoning
Lupus
Lymphedema
Macular degeneration
Mast Cell Activation Syndrome (MCAS)
Mental illness and mental health
(particularly bipolar disorder, depression, OCD, schizophrenia)
Migraine
Movement disorders
(see also Parkinson's, Tourette's, and other conditions, diseases)
MRSA, superbugs, and other antibiotic- and other-drug-resistant diseases
Multiple sclerosis (MS)
Osteoporosis
Parkinson's disease
Polycystic kidney disease (PKD)
Post-traumatic stress disorder (PTSD)(under Depression and other forms of mental illness)
Postural orthostatic tachycardia syndrome (POTS)
Psoriasis
Seborrheic dermatitis
Sepsis
Shingles (herpes zoster)
Sickle cell disease
Sjögren's syndrome
Sleep apnea and other sleep disorders
Stroke (under Cardiovascular problems)
Stuttering (Stammering)
Temporomandibular Joint Disorders (TMJ)
Tinnitus
Tourette Syndrome
Transient global amnesia (TGA)
Traumatic brain injury (TBI and CTE)
Tuberculosis
Turner syndrome
Ulcerative colitis (UC)
Vitiligo

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Psoriasis

• Questions and Answers About Psoriasis (National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Psoriasis is a chronic (long-lasting) skin disease of scaling and inflammation that affects greater than 3.1 percent of the U.S. population, or more than 6.7 million adults. Although the disease occurs in all age groups, it primarily affects adults. It appears about equally in males and females.
• Nails and Psoriasis (My Psoriasis Team)
• Psoriasis Speaks
• The Psoriasis Association (UK, information about research, treatment, news--and forums)
Psoriasis occurs when skin cells quickly rise from their origin below the surface of the skin and pile up on the surface before they have a chance to mature. Usually this movement (also called turnover) takes about a month, but in psoriasis it may occur in only a few days.
• Psoriasis (Mayo Clinic) Psoriasis is a common skin condition that changes the life cycle of skin cells. Psoriasis causes cells to build up rapidly on the surface of the skin. The extra skin cells form thick, silvery scales and itchy, dry, red patches that are sometimes painful. The primary goal of treatment is to stop the skin cells from growing so quickly. While there isn't a cure, psoriasis treatments may offer significant relief. Lifestyle measures, such as using a nonprescription cortisone cream and exposing your skin to small amounts of natural sunlight, also may improve your psoriasis symptoms. Click on additional headers to get past first page.
• National Psoriasis Foundation (800-723-9166)
• Phase 3 Trials of Ixekizumab in Moderate-to-Severe Plaque Psoriasis (New England Journal of Medicine, 7-28-16, @ http://www.nejm.org/doi/full/10.1056/NEJMoa1512711). Two phase 3 trials (UNCOVER-2 and UNCOVER-3) showed that at 12 weeks of treatment, ixekizumab, a monoclonal antibody against interleukin-17A, was superior to placebo and etanercept in the treatment of moderate-to-severe psoriasis.
• Psoriasis treatment may improve cardiovascular symptoms, researcher reports (Healio, 7-28-16)
• I Tried To Quit My Job Because Of Psoriasis, But Thankfully, They Wouldn’t Let Me (essay by Howard Chang, Folks: A Pillpack Magazine, 9-17-19) "My case of psoriasis is considered severe because it covers over ten percent of my body surface area. Even though I tried to hide it, I was always self-conscious about it. I could feel people staring at the visible patches on my hands, scalp, ears, legs, and arms, and imagined what they were thinking: is he contagious? Can I catch it? Through their support during my worst psoriasis flare-up, I got a glimpse of the way more people should be supported during their health crises. My openness in sharing my struggles with psoriasis ended up giving a voice to others in the community who lived with hidden chronic diseases.
• Short-Term High-Dose Psoriasis Therapy Shows Potential for Long-Term Disease Control (Charles Bankhead, MedPage Today, 3-13-24) High response rates out to 52 weeks with IL-23 inhibitor, correlating with eradication of T cells.
• Why Does Psoriasis Increase Risk for Obesity, Heart Disease? (Beth Orenstein, Advance Online, National Psoriasis Foundation, 5-6-15) "Doctors have long suspected that those with psoriasis and psoriatic arthritis, both inflammatory conditions, are more susceptible to a number of related conditions, including obesity, heart disease and diabetes. Doctors can't say whether it's the psoriasis that causes the related conditions, also known as comorbidities, or whether it's the other way around. But new research adds to the belief that those with psoriasis are at an increased risk of developing other inflammatory conditions, even those with mild psoriasis." An inflammatory process may be common to them all.
• The Heart-Psoriasis Connection: What You Need to Know (Erica Roth and Kathryn Watson, HealthLine, 2-24-16) Psoriasis is an autoimmune disease that inflames areas of skin, causing discomfort, itching, and raised skin lesions. People with any type of psoriasis have a risk of heart attack that is almost three times greater than people without psoriasis. Although psoriasis can mean an increased risk of heart problems, there are plenty of ways to strengthen your heart through diet, exercise, and stress reduction.

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Restless legs syndrome (RLS)
Also called Willis-Ekbom disease (WED), is a common and treatable neurological disorder that can affect anyone, regardless of age.
• Frequently Asked Questions (Restless Legs Syndrome Foundation. Explore this site. It is packed with useful and often unpredictable information.
• Helpful Links (Restless Legs Syndrome Foundation)

Reye's syndrome
• Keep Out of Reach of Children: Reye's Syndrome, Aspirin, and the Politics of Public Health by Mark A. Largent. "“A well-researched history of Reye’s syndrome that explores how science, medicine and politics interact. . . . As Largent examines the dispute over whether to require warning labels on bottles of aspirin, he also scrutinizes the actions and interactions—some might say the machinations—of pharmaceutical companies, consumer rights groups, epidemiologists, public health officials, courts and the U.S. Congress. . . . A revealing work.” —Kirkus Reviews
• NINDS Reye's Syndrome Information Page (National Institute of Neurological Disorders and Stroke, NINDS)
• National Reye's Syndrome Foundation. Reye's Syndrome, a deadly disease, strikes swiftly and can attack any child, teen, or adult without warning. It is a two-phase illness because it is almost always associated with a previous viral infection such as influenza (flu), cold, or chicken pox. While the cause and cure remain unknown, research has established a link between Reye's Syndrome and the use of aspirin and other salicylate containing medications, over the counter products, and topical use products. Scientists do know that Reye's Syndrome is not contagious and the cause is unknown. Reye's Syndrome is often misdiagnosed as encephalitis, meningitis, diabetes, drug overdose, poisoning, Sudden Infant Death Syndrome, or psychiatric illness. When Reye's Syndrome develops, it typically occurs when a person is beginning to recover from a viral illness. It tends to appear with greatest frequency during January, February, and March when influenza is most common.

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Skin diseases, new gene therapy for

• Genetically Altered Skin Saves A Boy Dying Of A Rare Disease (Richard Harris, NPR, 11-8-17) After eight months in the intensive care unit, the boy was well enough to go home. And, two years later, he is in school, even playing soccer. "The kid is doing quite well," Rothoeft said. "The skin is of good quality, it doesn't need any ointments or stuff like that. It's perfectly smooth and it is quite stable. And if he gets any bruises, they just heal like bruises in every other kid."
• New Skin for 7-Year-Old Boy Marks Advance in Gene Therapy (Amy Dockser Marcus, WSJ, 11-8-17) The new skin remains functional after 21 months, and doesn’t blister or require ointment or medication, according to the team of scientists and doctors from Austria, Germany and Italy who described the case in a paper in the journal Nature. The child in the study has Junctional Epidermolysis Bullosa (JEB), part of a family of rare, often lethal, skin-blistering diseases. Epidermolysis Bullosa affects only around 1 in every 20,000 births in the U.S.; JEB is a severe form of the disease, often leading to death in early childhood. (WSJ not available to everyone.)
• 9-year-old boy with rare disease now has engineered skin covering 80% of his body (Melissa Healy, LA Times, 11-8-17) Over a five-month period in the fall and winter of 2015, they harvested some of the boy's few remaining healthy skin cells. Using a virus to invade the cells, they introduced a corrected version of the mutated gene that had caused the catastrophic failure of his epidermis, the body's largest organ. They cultured the corrected cells and, on sheets backed with plastic and a naturally-occurring adhesive, used them to build many square meters of healthy new epidermis. Then, ever so delicately, they clothed his small body in a new set of skin.

Sleep apnea and other sleep disorders

This is a surprisingly common problem, which robs you of energy. Snore loudly? Pause for breath during night? Awaken tired? Get tested. Here are some helpful links. Scroll down for other types of sleeping problems.
• American Sleep Apnea Association
• ASAA forum (discussion board)
• Continuous positive airway pressure, or CPAP, a treatment that uses mild air pressure to keep the airways open, often used to treat sleep apnea (NHLBI)
• CPAP devices
• 10 Sleep Apnea Treatments to Consider for Patients Who Fail or Refuse CPAP (Sleep Review, 8-30-17)
---Provent Is Discontinued (Sleep Review MagazIne, 11-2-20)
• Provent (a new device, less cumbersome than a CPAP machine)
• In Wake of Philips Recall, Patients Still Waiting for Sleep Apnea Devices (Jennifer Henderson, Medpage Today, 9-21-22) Effects of recall reverberate through sleep medicine community. The recall by Philips Respironics has affected certain continuous positive airway pressure (CPAP) and bilevel positive airway pressure (BiPAP) machines and mechanical ventilators mainly due to potential health risks from polyester-based polyurethane (PE-PUR) sound abatement foam that was used in the machines.
• Kenneth Miller: Mapping the Darkness. The Visionary Scientists who Unlocked the Mysteries of Sleep , Part 1 of two episodes (Biographers Conversation, 4-25-24) Kenneth Miller chats with Gabriella Kelly-Davies about the choices he made while writing Mapping the Darkness, The Visionary Scientists Who Unlocked the Mysteries of Sleep, a group biography of four scientists who set out to answer two questions: “Why do we sleep?” and “How can we sleep better?”
• Severe Sleep Apnea Diagnosis Panics Reporter Until He Finds a Simple, No-Cost Solution (Jay Hancock, KHN and The Daily Beast, 10-3-22) None of my specialists mentioned turning on to my side — known in medical parlance as “positional therapy” — though the intervention is recognized as effective by many researchers. Sleeping on one’s back contributes to snoring and blockages, especially as people age and the muscles in the throat become looser. “Positional patients … can sleep in the lateral position and sleep quite well,” said Arie Oksenberg, a sleep researcher formerly at Loewenstein Hospital in Israel. See also: Readers and Tweeters Take Positions on Sleep Apnea Treatment (Letters to the Editor, KHN, 10-22)
• Finally, a cure for insomnia? (Simon Parkin, The Guardian, 9-14-18) We are living through an epidemic of sleeplessness, but the medical establishment has largely ignored the problem. Can a radical new therapy help you get some sleep? Hugh "Selsick has designed a five-week programme that combines cognitive behavioural therapy (CBT), designed to break a person’s negative associations with their bedroom, and the entire business of drifting off, with something Selsick terms “sleep efficiency training”, a calibrated reduction of the amount of time the patient spends in bed....Selsick believes that only by treating insomnia as a psychiatric disorder, with degrees of severity that range from mild to chronic, can the health service begin to develop and prescribe appropriate treatments....“Our job, primarily, as therapists, is not so much to tell people what to do – because we could just give it to them as a handout – but to convince them to do it for long enough for it to work.”'
• Patients With Narcolepsy Face a Dual Nightmare of Medication Shortages and Stigma (Lauren Peace, Tampa Bay Times and KFF Health News, 1-3-24) It's been more than a year since the FDA declared a national shortage of Adderall, and it’s affecting more than just patients with ADHD. Those with narcolepsy, a much rarer condition, are often treated with the same medication. Without it, they're often unable to drive or function as usual.

Nina Shand couldn't stay awake. She had taken afternoon naps since she was a teenager to accommodate her "work hard, play hard" attitude, but when she was in her mid-20s the sleepiness became more severe. Menial computer tasks put her to sleep, and a 20-minute drive across her city, St. Petersburg, Florida, brought on a drowsiness so intense that her eyelids would flutter, forcing her to pull over. She knew something was really wrong when she no longer felt safe behind the wheel. In 2021, she received a diagnosis: narcolepsy, a rare disorder that causes excessive daytime sleepiness
• Telemedicine May Be Boon for Treating Sleep Disorders (Salynn Boyles , Medpage Today, 6-17-16) Reimbursement uncertainty remains roadblock to wide adoption, but telemedicine could help address the shortage of providers to treat this condition.
• Sleep: A Guide for People with Physical Disabilities Facts and thoughtful explanations and suggestions, plus a brief guide to devices that may help people sleep: adjustable beds, air mattresses, anti-snoring mouthpieces, bed rails and bed rail pads, bed steps, chair beds, firm mattresses, floor pads, grab handles, hand blocks, headboard pads, low-profile beds, mattress elevators, memory foam mattresses, neck pillows, pillow elevators, rope ladders, slide sheets, turning beds, and waterproof mattresses.

Some books that may be helpful:
• Questions & Answers About Sleep Apnea by Sudhansu Chokroverty
• Sleep Apnea-The Phantom of the Night: Overcome Sleep Apnea Syndrome and Win Your Hidden Struggle to Breathe, Sleep, and Live by T. Scott Johnson
• Restless Nights: Understanding Snoring and Sleep Apnea by Peretz Lavie
• Sleep, Interrupted: A physician reveals the #1 reason why so many of us are sick and tired by Steven Y. Park
• 9 Celebrities Who Struggle With Sleep Just Like the Rest of Us (Katherine Lee, Everyday Health, 5-7-18) Which mentions Why So Awake?, website and sleep awareness program to help problem sleepers.
• Sleep Apnea and CPAP - A User's Manual By a User by Bruce Stein
• Snore No More by James L. Mosley

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Crohn's disease, ulcerative colitis, and inflammatory bowel disease (IBD)

• IBS vs. IBD: What Are the Differences Between Symptoms? (Medicine.net) IBD (inflammatory bowel disease) is a term used for a group of bowel diseases that cause inflammation in the digestive tract. The most common forms of IBD are ulcerative colitis (UC) and Crohn's disease. Crohn's disease can affect any portion of the GI tract, while ulcerative colitis only affects the large and small intestine, rectum, and anus.

IBS (irritable bowel syndrome) is a different problem with the digestive tract. IBS usually causes no ulcers or lesions in the bowel, and it involves only the colon.
• Major cause of inflammatory bowel disease found (James Gallagher, BBC, 6-5-24) A major cause of inflammatory bowel disease (IBD) has been discovered by UK scientists: a weak spot in our DNA that is present in 95% of people with the disease. It makes it much easier for some immune cells to go haywire and drive excessive inflammation in the bowels. Same discovery, another writeup by Crohn's & Colitis UK. "The next stage of research is to find ways to get the MEK inhibitors to target the macrophages in the gut."
• Inflammatory bowel disease (IBD) (Mayo Clinic) Inflammatory bowel disease (IBD) is a term that describes disorders involving long-standing (chronic) inflammation of tissues in your digestive tract. Types of IBD include:
---Ulcerative colitis. This condition involves inflammation and sores (ulcers) along the lining of your large intestine (colon) and rectum.
---Crohn's disease. This type of IBD is characterized by inflammation of the lining of your digestive tract, which often can involve the deeper layers of the digestive tract. Crohn's disease most commonly affects the small intestine. However, it can also affect the large intestine and uncommonly, the upper gastrointestinal tract.
Both ulcerative colitis and Crohn's disease usually are characterized by diarrhea, rectal bleeding, abdominal pain, fatigue and weight loss.
• Crohn's & Colitis Foundation of America (CCFA) . See especially Resources. A good source of information.
• Crohn’s and Colitis – Common but Misunderstood (Nathan Blake, HealthWeb Navigator, 12-7-16) Crohn’s and colitis are among the most common forms of inflammatory bowel disease (IBD).
• Crohn's Disease (Very Well Health) Crohn's disease is not the same for everyone. Explore common symptoms associated with different forms of inflammatory bowel disease and the treatment options available.
• What is Crohn's Disease? (CCFA) Crohn's disease is an inflammatory bowel disease (IBD) that causes chronic inflammation of the gastrointestinal tract. This site answers essential questions well.
• Patient Voices: Crohn’s Disease How does Crohn’s disease affect the lives of the young? How do men and women cope with the embarrassing symptoms and sometimes invasive treatments? Listen to the stories of seven men and women living with Crohn's disease. (NY Times, 8-27-08)
• Guselkumab-Golimumab Combo Shows Promise for Ulcerative Colitis (Zaina Hamza, MedPage Today, 10-26-22) More clinical remissions, endoscopic improvements, early trial finds
• Let'sTalkIBD YouTube Video created by Maggie Baldwin, who was diagnosed at age 11 (H/T Heidi White)
• Club11Health Ostomy Support and Patient Advocate Site
• Crohnology. A Patient-Powered Research Network that allows any patient to contribute to research for the cure. Currently focused on Crohn's & Colitis. What if we could learn from the collective experience of patients everywhere?
• Five Things I Wish I’d Known Before My Chronic Illness (Tessa Miller, NY Times, 2-18-19) #5: Support is everything. "What I thought was food poisoning turned out to be Crohn’s disease, a form of inflammatory bowel disease (IBD) that doesn’t have a cure. It fools my immune system into attacking my digestive system, resulting in what I can only describe as the attempted birth of my intestines through my butthole." A frank overview.
• Hypnosis Could Work Wonders on IBS (Kate Wheeling, The Atlantic, 11-29-23) "As far-fetched as it may seem, research suggests that hypnotherapy can help patients find relief from all sorts of gut disorders.... Research dating back to the 1980s suggests that, at least in the short term, hypnotherapy can be an effective treatment for irritable bowel syndrome, a gut disorder characterized by painful gastrointestinal symptoms but no visible damage to the gut. Now scientists are investigating whether it might also bring relief to patients with inflammatory bowel disease, who, like Zack, have observable damage to their digestive tract.

"...a large body of research shows a strong link between cognition and digestion. Millions of neurons, collectively known as the enteric nervous system, regulate our digestion and are in constant communication with the central nervous system. This connection, called the "brain-gut axis," may be why we feel so many emotions in our gut, whether the butterflies of anxiety or the clench of anger....When this brain-gut axis gets out of whack, it's known to worsen some digestive disorders....

"Zack remembers getting stressed out a lot as a kid—over grades, making friends, basketball games, or nothing in particular. He credits Navidi with alleviating not only his stomach pain but also the relentless anxiety; he still uses the relaxation techniques he learned from Navidi when he gets worried about school or a basketball game. But after two years of appointments with Navidi, for the first time since his 12th birthday, his symptoms are reliably under control—and stress doesn't make them come roaring back.Zack is still on medication for his ulcerative colitis; every eight weeks he has an injection of Stelara, a medication that works by blocking inflammatory proteins...."
• Crohn's disease (MedlinePlus) Crohn's disease is a form of inflammatory bowel disease (IBD). It usually affects the intestines, but may occur anywhere from the mouth to the end of the rectum (anus). Ulcerative colitis is a related condition.
• Crohn's Disease (Health magazine). One story posted there: Better Treatment Found for Crohn's Disease (Health, 4-14-10)
• Strong at the Broken Places by Richard M. Cohen (stories about five "citizens of sickness," individuals with ALS, non-Hodgkin's lymphoma, Crohn's disease, muscular dystrophy, and bipolar disorder).
• Learning Sickness: A Year with Crohn's Disease by Jim Lang
• What Is a Fecal Transplant, and Why Would I Want One? (Richard Klasco, NY Times, 1-18-19) Fecal transplant is used to treat gut infections and is now being studied as a treatment for obesity, urinary tract infections, ulcerative colitis, irritable bowel syndrome and a host of other conditions.
• Patient stories about Crohn's (Jennifer's website). Several people say Serovera changed their life.
• Crohn's diet
• Crohn's discussion group
• Colleen Webb Interview (Food Sleuth Radio, PRX, 1-12-17) Do you know the differences between Inflammatory Bowel Disease, Irritable Bowel Syndrome, and Small Intestinal Bacterial Overgrowth? Interview with Colleen Webb, clinical nutritionist at Weill Cornell Medical Center, who describes her work helping patients with assorted gastro-intestinal disorders, and tricks for adjusting the diet to reduce distress and promote gut health. Webb discusses the origins or GI disorders, the potential benefits of probiotics, and Mediator Release Testing (MRT) to identify food sensitivities. See also Webb's blog Nutrition News (in conjunction with Jill Roberts Center for Inflammatory Bowel Disease).
• What is ulcerative colitis? (Mayo Clinic) Ulcerative colitis (UL-sur-uh-tiv koe-LIE-tis) is an inflammatory bowel disease (IBD) that causes long-lasting inflammation and ulcers (sores) in your digestive tract. Ulcerative colitis affects the innermost lining of your large intestine (colon) and rectum. Symptoms usually develop over time, rather than suddenly. Ulcerative colitis can be debilitating and can sometimes lead to life-threatening complications. While it has no known cure, treatment can greatly reduce signs and symptoms of the disease and even bring about long-term remission. Overview of symptoms, types, causes, risk factors, complications, and procedures.
• Ulcerative Colitis (Q&A, National Institute of Diabetes and Digestive and Kidney Diseases) A fuller discussion, with illustrations.
• Irritable Bowel Syndrome (IBS) (Barbara Bolen, VeryWell.com)

Other gastroinestinal disorders include Celiac disease, diverticulitis, GERD, and C. diff.

Cystic Fibrosis (also known as CF)

Cystic fibrosis is an inherited disorder that causes severe damage to the lungs, digestive system and other organs in the body. Cystic fibrosis affects the cells that produce mucus, sweat and digestive juices. These secreted fluids are normally thin and slippery.~Mayo Clinic on symptoms and causes (with useful illustration)
• Cystic Fibrosis (CF) (National Heart, Lung, and Blood Institute, or NHLBI) Mucus is normally slippery and protects the linings of the airways, digestive tract, and other organs and tissues. People who have cystic fibrosis make thick, sticky mucus that can build up and lead to blockages, damage, or infections in the affected organs. Inflammation also causes damage to organs such as the lungs and pancreas.
Some people who have cystic fibrosis have few or no signs or symptoms, while others experience severe symptoms or life-threatening complications. Symptoms of cystic fibrosis depend on which organs are affected and the severity of the condition.
• How Writing About My Disease Taught Me It’s Okay To Struggle, a guest post by Cindy Baldwin (Amanda MacGregor, Teen Librarian Toolbox, School Library Journal, 5-17-24) "After the rocky first years of my life, I was a “lucky” CFer. Thanks in part to my early diagnosis, my health stabilized after the first few rough years, and I was in better shape than many CF patients. But as a 13-year-old trying to navigate hours of daily breathing treatments, nighttime coughing fits, constant stomach aches, and hospital stays, I didn’t usually feel very lucky." She tries to convey the experience of living with CF in her fast-paced story, No Matter the Distance, which stars Penny, an eleven-year-old girl with cystic fibrosis whose dream of winning the sixth grade poetry slam and helping a local biologist save the dolphin who’s been stranded in her backyard creek are complicated by a cystic fibrosis exacerbation and a course of IVs.
• What It’s Like to Learn You’re Going to Live Longer Than You Expected (Daniela J. Lamas, Opinion, NY Times, 2-6-23) Since its approval in 2019, the drug therapy, Trikafta, has been heralded as a game changer for a majority of those with cystic fibrosis. Some people have genetic mutations that do not allow them to benefit from Trikafta, which targets the most common C.F. mutation. Still, many of those born with the disease today can expect to live into their 60s...
• Three Drugs Better Than Two (or One) in Cystic Fibrosis (John Gever, MedPage Today, 8-25-21) Another group of CF patients sees a win for triple therapy in phase III trial.
• Breath from Salt: A Deadly Genetic Disease, a New Era in Science, and the Patients and Families Who Changed Medicine Forever by Bijal P. Trivedi. "How Boston businessman Joe O’Donnell, after losing a son to cystic fibrosis in 1986, raised hundreds of millions for the Cystic Fibrosis Foundation, which pioneered the use of “venture philanthropy” for drug discovery....Most notably, this included a well-placed investment in Vertex Pharmaceuticals, which in 2012 pioneered the first of several treatments involving drugs matched to patients’ individual gene mutations." Elaborates on "the science as well as the business behind the fight against cystic fibrosis..."~Publishers Weekly.
• Cystic Fibrosis (Health Guide, New York Times)
• Cystic Fibrosis News Today. Check out its forums.

• Chronic Mom says "Hope is catching." A blog for parents of children with chronic health issues, by a mother of two children who have cystic fibrosis.

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Hearing loss and deafness

Hearing aids

• Hearing aids: How to choose the right one (Mayo Clinic)

• Best hearing aids (National Council on Aging, 3-22-24) Including The 10 Most Affordable Hearing Aids of 2024 (NCOA, 3-18-24) Very helpful. Print out (or study) the prices and details here before you meet with a hearing aid professional.

• Hearing Aids (NIH, National Institute on Deafness and Other Communication Disorders). Answers to frequently asked questions from a solid source.
• Hearing Aid Buying Guide (Consumer Reports--explains differences in features; with a subscription you can see ratings for different hearing aids). Some say Costco is the place to go for best price.
• Hearing Aids (reviews and consumer ratings, MySeniorSource)
• What you don't know about hearing aids (Juliëtte Sterkens, video of 15.53 minute TED talk, TEDxOshkosh, 2024) Hearing aids are incapable of restoring hearing to normal, especially in acoustically challenging situations. But the good news is that modern technology continues to bring us new, sometimes hidden, and often unknown features that can help those with hearing loss overcome more of their hearing challenges.
• Say That Again: Using Hearing Aids Can Be Frustrating for Older Adults, but Necessary (Judith Graham, KFF Health News,2-28-24) Consider larger, customized devices (easier to manipulate), check out accessories, wearing your hearing aid all day, and consult an audiologist or hearing specialist who, for a fee, can provide guidance.
• Hearing aids slow cognitive decline in people at high risk (NIH, 8-8-23) Hearing aids reduced the rate of cognitive decline in older adults at high risk of dementia by almost 50% over a three-year period.
• How to make your hearing aids more effective and less frustrating (Judith Graham, WaPo, 2-25-24) Experts share their advice for older adults who have a hard time using their hearing aids for various reasons. See last paragraph, about Medicare coverage for consultations.
The study Reed Graham refers to: Prevalence of Hearing Loss and Hearing Aid Use Among US Medicare Beneficiaries Aged 71 Years and Older (Nicholas Reed et al., JAMA Open Network, 7-28-23) In one study, only 29 percent of those with hearing loss used hearing aids. Yet 65.3% of those aged 71 years or older had hearing loss, and by age 90 years, 96.2% of adults had hearing loss.

• Say What? Hearing Aids Available Over-the-Counter for as Low as $199, and Without a Prescription (Phil Galewitz, KHN, 10-17-22)
---Hearing aids are now sold over-the-counter. Here’s how to pick one. (Amanda Morris, WaPo, 10-16-22) If you’re a first-time hearing aid buyer, here's advice about the different features and how to get the best fit
---In Major Shift, Hearing Aids May Soon Be Sold Without A Prescription (KHN Morning Briefing, 10-20-21) For decades, the FDA has regulated hearing aids as medical devices, which adds to the cost and effort of getting fitted for one. The FDA's draft rule, which still faces a 90-day comment period before it's finalized, would allow hearing aids to be sold over the counter.
---Over-The-Counter Hearing Aids Could Be Available By October After FDA OK (KHN Morning Briefing, 8-17-22) In a move that could make hearing aids more affordable and accessible for an estimated 30 million Americans, the Food and Drug Administration issued a final rule Tuesday allowing the devices to be sold without a prescription.
---FDA Gives Green Light to Cheaper, Over-the-Counter Hearing Aids (Michelle Crouch, AARP, 8-16-22) Americans with mild to moderate hearing loss can now buy less expensive hearing aids without a medical exam or fitting
---Bipartisan Over-the-Counter Hearing Aid Legislation to Become Law Legislation Included in FDA Reauthorization Act will make certain types of hearing aids available over the counter to Americans with mild to moderate hearing impairment. It also requires the FDA to write regulations ensuring that this new category of OTC hearing aids meets the same high standards for safety, consumer labeling and manufacturing protections as all medical devices, providing consumers the option of an FDA-regulated device at lower cost. "This law will make a life changing difference for millions of Americans who experience hearing loss but can't access the hearing aid technology they need because of high costs and excessive regulations," said Senator Warren.

• Mom Vs. Texas in a Fight to Get Kids’ Hearing Aids Covered (Dan Weissmann, An Arm and a Leg, KHN, 11-14-19) Texas now requires health plans to cover medically necessary hearing aids and cochlear implants for children.

• The FDA got it right with hearing aids. Updating Medicare coverage is next (Nicholas S. Reed and Frank R. Lin, STAT News, 9-6-22. Subscribers only)
• OTC Hearing Aids: What You Should Know (FDA, the U.S. Food & Drug Administration) To increase the public's access to hearing aids and improve hearing, the FDA established a new category of over-the-counter (OTC) hearing aids for adults 18 years of age and older with perceived mild to moderate hearing loss that went into effect on October 17, 2022. Useful information here plus links to more information.
• How to Get Hearing Aids (FDA)
• “You’re Old Without Hearing Aids”— Addressing the Silent Epidemic of Hearing Loss (Thomas H. Lee interviews Charlotte Yeh, MD, the Chief Medical Officer for AARP Services, Inc., Catalyst, 4-9-19) If she could change just one thing in health care, it would be to have CMS (Medicare) cover hearing aids. "Medicare, under CMS, is statutorily excluded from covering hearing aids and hearing services because back in 1965, when Medicare was passed, hearing loss was thought to be a normal consequence of aging — why would we cover anything that was normal?... the VA covers hearing aids because it turns out hearing loss and tinnitus are the largest disability claimed by veterans." Where things stand and are likely to change for those with hearing problems.
• Hearing Aids (National Institute on Deafness and Other Communication Disorders, NIDCD. Improving the lives of people who have communication disorders. )

• Health benefits of hearing aids (Temma Ehrenfeld, Healthy Hearing, 2-6-2020)
• Should you wear hearing aids all the time? (Temma Ehrenfeld, Healthy Hearing, 10-12-2020) "We don’t want the auditory system deprived of sound because over time that can change auditory processing abilities,” she said. Your brain may forget how to hear certain words and sounds, in other words. This is known as auditory deprivation. See more such stories by Temma.
SOUND SHADOW. A phenomenon caused by the ABSORPTION or obstruction of a SOUND WAVE by an object in its path. The effect produced is perceived as a reduction in LOUDNESS depending on the observer's position with respect to the sound source and obstructing object and is greatest when the three are aligned.

• Mild Hearing Loss? Hearing Aids Aren't the Only Answers (Edward C. Baig, AARP, 4-22-21) 'Hearables,' specialized headphones and other tech tools can provide sound solutions at a lower cost.

• Hearing Aids Are Changing. Their Users Are, Too. (Neelam Bohra, NY Times, 5-6-23) As more young people risk hearing loss, over-the-counter hearing aids are providing new options, but also confusing choices. More than a billion young people worldwide risk noise-induced hearing loss, according to the World Health Organization. Hearing aids are expensive — especially for people who lack good medical insurance — with most costing $1,000 and more. Many models still have to be prescribed by an audiologist. And while the stigma might be fading, it has not entirely vanished.
There are dozens of brands to choose from, ranging from small, in-ear pods to those that use long metallic arcs around the ear. Most new models have Bluetooth streaming capacities. And some of the over-the-counter options can even be ordered online with free shipping.

• Soundly. Test your hearing online. Use Soundly to compare over-the-counter and traditional hearing aids side by side. Read about the pros and cons and features of the 10 highest-rated hearing aids (according to Soundly researchers). Scroll down for answers to frequently asked questions.
• Over-the-Counter Hearing Aids Are as Effective as Prescription Devices, Study Finds (Michelle Crouch, AARP, 4-21-23) For those who have mild to moderate hearing loss, self-fitting hearing aids work as well as ones fitted by audiologists.
• How to Shop for an Over-the-Counter Hearing Aid (Sari Harrar with Ed Baig, AARP, 11-17-22) Hearing aids such as the Eargo 6, Lexie B2 and Jabra Enhance Plus can be purchased without a prescription or a visit to an audiologis

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• Panelists explore what’s missing from Medicare (Liz Seegert, Covering Health, Association of Health Care Journalists, 12-17-18) Many beneficiaries are surprised to learn that Medicare does not cover dental care, hearing aids or eyeglasses. Many pensions don’t cover these services either. 'Hearing aids cost from $4,700 to $12,000 a pair. [Prices have gone down since this article was written.] Surprisingly, fewer than 20 percent of people who own hearing aids actually use them – even the newer, less expensive, over-the-counter models.

“It’s an access issue,” said Reed. “Proper fitting and fine tuning require multiple specialist visits and there’s no Medicare coverage whatsoever.” The 2017 Over-the-Counter (OTC) Hearing Aid Act allows these devices to be marketed and sold without a prescription. The FDA has until 2020 to produce regulations. But there’s still a disconnect, Reed said. “Medicare Part B covers one hearing exam a year if ordered by a physician for medical reasons. However, the exam cannot be related to a hearing aid, despite the fact that to fit a hearing aid, you have to have a hearing exam.”'

• Reversing hearing loss by regrowing hairs (Lauren Sharkey, Medical News Today, 12-23-18, fact-checked by Carolyn Robertson) Scientists have long known that animals such as fish and birds are able to keep their hearing intact by regenerating the sensory hair cells found in the cochlea. In fact, mammals are the only vertebrates that are unable to do this. Scientists will have to do further research into the use and process of EGF receptors in order to carry out any kind of human trial.

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• What Exactly Is an Over the Counter Hearing Aid? (Katherine Bouton, on her website, Hearing Aids, Hearing Loss, Hearing Help) Follow Katherine Bouton, whose hearing loss and journalistic skills make her a truly helpful expert.
• Should You Buy an OTC Hearing Aid When They Become Available? (Consumers' Checkbook, 12-2020--kept here for historical perspective!) The FDA has been working (slowly) to develop guidelines and quality standards for OTC hearing aids. Since they’re not yet available, no one knows how inexpensive OTC aids will be. But specialists we spoke with estimate they’ll cost $100 to $750 each—and like models currently sold by pros, there likely will be considerable differences from device to device. Read this before buying a pair.

• Need a Hearing Aid? Get the Best Advice and Fit for You (Bonnie Goldstein)

BOOKS about deafness and hearing loss

• Shouting Won't Help: Why I—and 50 Million Other Americans—Can't Hear You by Katherine Bouton. (Bouton tells her story about adult onset of profound deafness, and profiles others with similar losses — an opera singer, a pastry chef, a psychoanalyst — and, as Jerome Groopman writes, "offers a wealth of information and insight about a frustrating and isolating condition."
• The Butterfly Cage by Rachel Zemach. "This mesmerizing, funny, and disruptive narrative invites you to be a fly on the wall in a Deaf classroom at a hearing school, experiencing the immense frustration, unbridled joy, and indelible humor that arise for Deaf adults and children in a hearing environment."

• Hear & Beyond: Live Skillfully with Hearing Loss by Shari Eberts and Gael Hannan. A “skills-based approach” to hearing loss that’s focused more on communication, though they also talk about their own journeys.
• Volume Control: Hearing in a Deafening World by David Owen, a New Yorker writer on the surprising science of hearing and the remarkable technologies that can help us hear better
• What's That Pig Outdoors?: A Memoir of Deafness by Henry Kisor. Kisor, who lost his hearing at the age of three after a bout of meningitis, lipreads, does not sign, and never entered the subculture of the deaf. He writes of the problems a deaf person has learning to think in language, and with humor describes his life growing up in a hearing world -- the only deaf student at Trinity College, a graduate student at Northwestern, and book review editor for major newspapers.
• In Silence: Growing Up Hearing in a Deaf World by Ruth Sidransky.Growing up as the hearing daughter of deaf Jewish parents in the Bronx and Brooklyn during the 1930s and1940s, the Depression and afterward.
• Hands of My Father: A Hearing Boy, His Deaf Parents, and the Language of Love by Myron Uhlberg.
• Alone in the Mainstream: A Deaf Woman Remembers Public School by Gina A. Oliva
• All the Ways I Hear You by Stephanie Marrufo features a hard-of-hearing child named Sy.
• Max and His Hearing Aids by Emily Mikoski, inspired by her son Max’s hearing loss journey.
• El Deafo by Cece Bell. A popular book for school age kids about a girl who turns her hearing loss (and in particular her FM system) into a powerful and funny asset with her schoolmates.
• Mean Little Deaf Queer: A Memoir by Terry Galloway
• The Gallaudet Dictionary of American Sign Language , ed. by by Clayton Valli

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Deafness and American Sign Language (ASL)

• Made to Hear: Cochlear Implants and Raising Deaf Children by Laura Mauldin. A mother whose child has had a cochlear implant tells Laura Mauldin why enrollment in the sign language program at her daughter’s school is plummeting: “The majority of parents want their kids to talk.” Some parents, however, feel very differently, because “curing” deafness with cochlear implants is uncertain, difficult, and freighted with judgment about what is normal, acceptable, and right. Made to Hear sensitively and thoroughly considers the structure and culture of the systems we have built to make deaf children hear. See also When Deafness Is Medicalized: Inside the Culture Clash Over Cochlear Implants (James McWilliams, Pacific Standard, 1-6-18) Some fear that, by offering deaf people access to sound, so-called bionic ears could spell the end of the culture built around ASL (American Sign Language).
• Learning American Sign Language: Levels I & II--Beginning & Intermediate
• Train Go Sorry: Inside a Deaf World by Leah Hager Cohen. The hearing grandchild of deaf immigrants, Cohen (a sign-language interpreter whose father headed the Lexington School for the Deaf in Manhattan) traces the lives of a Russian immigrant (learning a second and third language, English and American sign language or ASL) and a boy raised in an urban ghetto, to explore the world and issues of deafness: debates over ASL, oralism, mainstreaming, cochlear implants (which some contend rob the deaf of their culture). ("Train go sorry" means "you missed the boat.")
• Deaf Like Me by Thomas S. and James P. Spradley. Parents of a child born deaf as the result of an epidemic of German measles waste years avoiding sign language before learning how to communicate with their child
• An Entire Town Secretly Learned Sign Language To Surprise Their Deaf Neighbor (Pulptastic) Muharrem, a resident of a Turkish suburb, is a regular guy with hearing loss who communicates through sign language. But on this particular day, when he and his sister went around town, he noticed something different (courtesy of Samsung and his sister). A moving video.
• The Cry of the Gull by Emmanuelle Laborit. What it was like to grow up deaf in France, where sign language was banned as too sensual until 1976, well into Laborit's childhood; what it's like to communicate with others if you can't hear them; and how learning sign language made her life easier. (Read this if your child or student is deaf.)
• A Loss for Words: The Story of Deafness in a Family by Lou Ann Walker. A compelling memoir. "...now I see that what deaf people do in sign language is even more mysteriously and specifically, biologically human than speech itself. My respect for the deaf, always high, is now still higher. My awe for the human mind is out of sight." ~ Lewis Thomas

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Deep vein thrombosis (DVT)

• Everything You Want to Know About Deep Vein Thrombosis (DVT) (Healthline) Excellent overview.
• The Road Trips That Changed My Life (Cydnee’s Story, Stop the Clot, National Blood Clot Alliance) "I was taking estrogen-based birth control pills for two years when I had a visit with my primary care physician due to concerns I had about pain in my leg and tenderness in my shin. She brushed it off, ...said it was phlebitis and suggested that I apply a warm compress for the pain. I didn’t listen to my body, and my doctor didn’t listen to my concerns. A few months later, I went on a 10-hour road trip, unaware I had a clotting disorder....See Birth control methods that contain estrogen can put a woman at increased risk for blood clots (Women & Blood Clots)
• The Death of Prince Helped to Save My Life When I Experienced a Blood Clot (Michele’s Story, Stop the Clot) "One spring morning I woke up from a long, deep sleep in my California apartment. I turned on the morning Los Angeles news and saw that the musician Prince had died. I also simultaneously realized, in that moment, that I could not feel my toes in my right foot. I had been limping..."
• Deep vein thrombosis (DVT) DVT is a blood clot that develops inside a larger vein, usually deep within the lower leg or thigh. Untreated, it may travel to the lungs. "Recently, it has been referred to as "Economy Class Syndrome." (Society of Interventional Radiology, or SIR)
• Understanding Deep Vein Thrombosis ((DVT = Blood Clot, Usually in the Leg) (Stuart T. Haines, ClotCare Online) Many helpful explanations on this site, including Understanding the PT-INR Test (Marie B. Walker)
• Slideshow: A visual guide to deep vein thrombosis (WebMD)
• OrthoInfo on DVT (see in particular the illustration of how the blood clot develops)
• I Thought I Did Everything Right (Lauren’s Story, Stop the Clot) After her fourth knee surgery, she stopped her combination birth control for two weeks and took aspirin to lower her risk for a blood clot....gravity pulls inﬂammation down after surgery to the foot and ankle, which is normal following knee surgery, but aching weeks after surgery isn’t.
• DVT Coalition's DVT risk assessment tool
• What are graduated compression stockings, where do I get them, and how do I put them on? (one of several helchronpful information pieces posted on Clotcare Online Resource)
• Deep vein thrombosis: Don't ignore symptoms of silent killer (Steve Vernon, CBS News, 6-18-13). "My wife almost lost her leg a few weeks ago. Then she almost lost her life. The symptoms didn't seem life-threatening at the time, so we al most made a fatal mistake by delaying seeking medical treatment."

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Temporomandibular Joint (TMJ) Disorders

• TMJ Disorders (National Institute of Dental and Craniofacial Research, or NIDCR)
• The Horrors of TMJ: Chronic Pain, Metal Jaws, and Futile Treatments (Brett Kelman and Anna Werner, CBS News and KFF Health News, 4-4-24) Temporomandibular joint disorders, known as TMJ or TMD, which afflict up to 33 million Americana, according to the National Institutes of Health. Dentists have attempted to heal TMJ patients for close to a century, and yet the disorders remain misunderstood, under-researched, and ineffectively treated, according to an investigation by KFF Health News and CBS News (partly because they affect women more than men). Most health care professionals, including dentists, have received “minimal or no training” on TMJ disorders and patients are “often harmed” by “overly aggressive” care and the lack of proven treatments, according to a National Academies study.
• TMJ disorders (Mayo Clinic's brief entry has a useful illustration) TMJ disorders affect the temporomandibular joint, located on each side of your head in front of your ears. A soft cartilage disk acts as a cushion between the bones of the joint, so the joint can move smoothly.
• TMJ exercises (Healthline)
Temporomandibular Joint Disease (Penn Medicine Center) for patients with dysfunction of the temporomandibular joint (TMJ).
• TMJ Pain Relief: 8 Best Practices to Help Manage Temporomandibular Joint Disorders (Penn Medicine, 2-26-22) “While most TMD symptoms resolve in a few weeks to months, some painful conditions can be aggravated by certain behaviors or harmful habits that strain jaw and neck muscles.”
• Center for Temporomandibular Joint Disease (TMJ) Fact sheet with links to further information.
• ‘AGGA’ Inventor Testifies His Dental Device Was Not Meant for TMJ or Sleep Apnea (Brett Kelman, KFF Health News, and Anna Werner, CBS News, 12-22-23) At least 23 patients, some of whom described being desperate for relief from sleep apnea or temporomandibular joint disorder (TMJ), have sued Steve Galella in recent years claiming that the AGGA damaged their mouths and, in some cases, caused tooth loss. The Tennessee dentist has said under oath that he never taught dentists to use the device for those ailments — contradicting video footage of him telling dentists how to use it. Steve Galella, the inventor of the Anterior Growth Guidance Appliance, or “AGGA,” has said in court depositions that his device had been used on about 10,000 patients, and that he trained many dentists to use the AGGA in classes around the U.S. and overseas.

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Tinnitus

(pronounced TIN-ih-tus or tih-NITE-us)

• Causes of tinnitus (Mayo Clinic). And treatments.
• Tinnitus: Ringing in the ears and what to do about it (Harvard Health, 4-8-20) Most people who seek medical help for tinnitus experience it as subjective, constant sound like constant ringing in the ears or a buzzing sound in the ear, and most have some degree of hearing loss. Things that cause hearing loss (and tinnitus) include loud noise, medications that damage the nerves in the ear (ototoxic drugs), impacted earwax, middle ear problems (such as infections and vascular tumors), and aging. Tinnitus can also be a symptom of Meniere's disease, a disorder of the balance mechanism in the inner ear. Here's how to minimize it.
• This tinnitus discovery could lead to a new treatment (Kristin Barry, Ted Talk, YouTube video, TEDxKingsParkSalon
• Tinnitus Worsens for Vaccine Scientist Who Points to Onset After COVID Vax (Jennifer Henderson, MedPage Today,10-26-23) In March 2022, "Gregory Poland, MD, was grappling with what he described as unrelenting symptoms of tinnitus that he developed shortly after receiving his second dose of an mRNA COVID-19 vaccine in early 2021.
"About a year-and-a-half later, after his first COVID infection, Poland told MedPage Today that his tinnitus has worsened. Indeed, many studies have shown that COVID itself can cause tinnitus....Poland said he has received hundreds of emails from people all over the world claiming they, too, developed tinnitus soon after COVID vaccination. And though pro-vaccine himself, Poland said he would like to see more research to determine whether there may be any potential link.
"As for the CDC, a spokesperson told MedPage Today in an email that the agency is aware of reports to VAERS of tinnitus following COVID vaccination, adding that tinnitus is a common condition, is heterogenous in presentation and course, and is without a discernable cause in many cases."
• Tinnitus: Ringing in the ears and what to do about it (Harvard Health Publishing, 8-15-22) Constant noise in the head— such as ringing in the ears—rarely indicates a serious health problem, but it sure can be annoying. Here's how to minimize it.
• (Josef Rauschecker, TEDxCharlottesville, 1-23-17) Talk and transcript.
• ‘Like the brakes of a train never coming to a stop’: On the torture of tinnitus (Michel Faber, The Guardian, 10-17-23) Six years ago the writer Michel Faber developed tinnitus. He explains how it has reframed his relationship with his body and the world – and how music is his salve. "Our eardrums are conceptually no different from the drums we see a drummer playing – the world is playing us."
• Neuroscientists Identify Brain Mechanism Responsible for Tinnitus, Chronic Pain (The Hearing Review, 9-23-15) A good explanation of tinnitus and of paths researchers are exploring to discover ways to treat the disorder.
• Symptoms of Tinnitus (American Tinnitus Association) See also What You Should Know About Tinnitus and Patient Stories (also ATA).
• The Link Between Musicians and Tinnitus (Signia)
• New hope for people with tinnitus (Consumer Affairs)
• Tinnitus support group, on Facebook
• Army Tests Hearing Drug at the Rifle Range (Amy Dockser Marcus, WSJ, 8-21-15) Medicine might prevent noise-induced hearing damage, a persistent problem for soldiers repeatedly firing loud weapons. "Tinnitus, or constant ringing in the ears, and hearing loss were the most prevalent of the new service-connected disabilities for which the U.S. Department of Veterans Affairs paid compensation in fiscal 2013."
• Tinnitus resources (Hearing Health Foundation)
• MarkeTrak VIII: The Prevalence of Tinnitus in the United States and the Self-reported Efficacy of Various Treatments (The Hearing Review, 11-1-11)
• Magnetic pulses to the brain deliver long-lasting relief for tinnitus patients (Neuroscientist News, 6-16-15)
• Ringing In Your Ears? Finally, Researchers Finding New Clues About Tinnitus (Richard Knox, WBUR, CommonHealth Reform and Reality, 5-6-15) A new report’s findings suggest that tinnitus is more complicated than scientists thought.

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Tourette Syndrome

Listing only a few of many available resources.
• Tourette Syndrome Association (TSA)
• The Tourette Syndrome & OCD Checklist: A Practical Reference for Parents and Teachers by Susan Conners
• Josh Hanagarne, World's Strongest Librarian, talks about life with Tourette's. (Excellent video.)
• Tourette Syndrome (Neuroscience for Kids) Tics are irregular, uncontrollable, unwanted, and repetitive movements of muscles that can occur in any part of the body. Movements of the limbs and other body parts are known as motor tics. Involuntary repetitive sounds, such as grunting, sniffing, or throat clearing, are called vocal tics.
• Tic Talk: Living with Tourette Syndrome: A 9-Year-Old Boy's Story in His Own Words by Dylan Peters. TS is a neurological disorder that affects roughly 100,000 Americans, according to NIH. It most often strikes youngsters between the ages of six and nine.
• Lars Doucet on Tourette's, Narcolepsy and Being Exorcised (Uri Bram, The Browser, 11-24-21) "Turns out that when you massively embarrass yourself constantly in front of everybody all the time you don’t really have much to lose anymore by getting up in front of a microphone! It’s also made me kind of have a defacto radical honesty kind of mindset, not so much out of principle but because it makes me such a terrible liar. I’ve stumbled into an incredibly brazen but disarming personality half-way against my will and at least in my current cultural context it works out well for me."
• Children Persevering in the Face of Tourette's (Ginia Bellafante, NY Times, 11-11-05) "Tourette's is a neurological disorder that popular culture has treated as a comedic form, an affliction that seems to leave sufferers unable to suppress the urge to tell the host of a dinner party that his lamb shanks taste like a dictionary. Coprolalia, that aspect of Tourette's that results in the blurting out of inappropriate remarks and obscenity, is actually quite rare....It is with Tourette's as it is actually experienced by young people that "I Have Tourette's but Tourette's Doesn't Have Me," an illuminating documentary on HBO, is concerned. (A review of the documentary) See "I have Tourette's, But Tourette's Doesn't Have Me"
• Natural Treatments for Tics and Tourette's: A Patient and Family Guide by Sheila R. Rogers
• Tourette Syndrome Fact Sheet (National Institute of Neurological Disorders and Stroke)
• Orphan Drugs (99% Invisible, Episode 329, 11-13-18) Abbey Meyers’ first son, David, born in 1968, had Tourette's syndrome, a condition most doctors weren't familiar with then. David was enrolled in a clinical trial for a drug that was designed to treat schizophrenia, which it was not successful for, and the firm doubted it would be worth developing for an obscure syndrome. Abbey got a California congressman to hold a hearing, which one LA Times reporter attended, whose story caught the eye of Jack Klugman's brother, a producer on Klugman's popular show Quincy. The Orphan Drug bill got passed, partly helped by a second Quincy show (on orphan drugs), enabling the first drug company to receive FDA approval for a certain type of treatment to get market exclusivity for 7 years. 'Abbey Meyers has mixed feelings about her legacy. “Thirty to thirty-five years later, the Orphan Drug Act has been responsible for the most miraculous treatments in many diseases,” she says, “but it’s also been a major economic problem, because some of the companies that make these drugs have put a price on them that make the drugs absolutely unaffordable.”'
• The World's Strongest Librarian: A Memoir of Tourette's, Faith, Strength, and the Power of Family by Josh Hanagarne. Josh Hanagarne was six years old and onstage in a school Thanksgiving play when he first began exhibiting symptoms of Tourette's; he wasn't officially diagnoseduntil his freshman year of high school. By the time he was twenty, the young Mormon had reached his towering adult height of 6’7” when—while serving on a mission for the Church of Latter Day Saints—his Tourette’s tics escalated to nightmarish levels. With humor and candor, he explores the mysteries of this little-understood disorder and the very different worlds of strongman training and modern libraries. Read these lovely stories about his life and his book: 'World's Strongest Librarian' strengthens writing voice in new memoir (Ben Fulton, Salt Lake City Tribune, 5-8-13 -- Josh Hanagarne finds refuge from Tourette's in reading, heavy lifting and now writing) and this Boston Globe review (Jesse Singal 5-21-13). And take time to listen to this funny and inspiring speech to librarians (closing keynote, Internet Libraries conference, 10-30-13)
• Sheila Nevins discusses Tourette Syndrome on Good Day New York. She was treating dry eyes, tonsils, throat-clearing--and it was difficult to get a diagnosis for her child.

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Transient global amnesia (TGA)

• Transient global amnesia (Mayo Clinic) "Transient global amnesia is a sudden, temporary episode of memory loss that can't be attributed to a more common neurological condition, such as epilepsy or stroke. During an episode of transient global amnesia, your recall of recent events simply vanishes, so you can't remember where you are or how you got there....Fortunately, transient global amnesia is rare, seemingly harmless and unlikely to happen again. Episodes are usually short-lived, and afterward your memory is fine."
• The Day That Went Missing (Trip Gabriel, NY Times, 7-16-16) "Unlike other triggers of memory loss, like a stroke or epileptic seizures, the condition is considered harmless, and an episode does not last long....Another symptom of my condition was the inability to form short-term memories. I read Alice’s note over and over. By the time I reached the end, I had already forgotten what I had just read, and began again."
• The Day of Forgetting (Daan Heerma Van Voss, Opinionator, NY Times, 5-28-14)
• A Brief Vacation from Myself (Tom Fields-Meyer,8-30-13) "That night I get a brain M.R.I., the next morning an EEG. The tests confirm that my brain is normal, but that doesn’t help me shake the disconcerting feeling that we are all just one misfiring neuron away from forgetting who the president is or what we did last night or what transpired in our most intimate moments."
• CASES; Memorable, For the Loss Of Memory (Candice Reed, Health, NY Times, 8-19-03) "I thought my husband, Ralph, was having a stroke. What else could cause a healthy 54-year-old man suddenly to become disoriented and confused? More than eight hours after the onset of his symptoms, the attending doctor at our local E.R. diagnosed a very strange disorder -- amnesia -- or transient global amnesia. It is a temporary brain affliction that affects about 23.5 per 100,000 people every year."

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Traumatic Brain Injury (TBI) and Chronic Traumatic Encephalopathy (CTE)

and a bit about other brain disorders or disorders of consciousness

• Traumatic Brain Injury Survival Guide (Dr. Glen Johnson, clinical neuropsychologist). Read this extended guide online.
• What Is CTE? Chronic Traumatic Encephalopathy Explained (Brain Injury Research Institute)
• Different, but still whole: A young scientist reflects on his journey back from a brain injury (Jonathan Lambert, Dallas News, 8-24-18) These bodies and brains of ours — and the lives they enact — are fragile, and can be broken in an instant.

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• After the Loss of a Son, a Football Coach Confronts a Terrible Truth (John Branch, NY Times, 8-28-23) Meiko Locksley was found to have had a degenerative brain disease often associated with football. His father, the head coach at Maryland, is still reckoning with the implications. Researchers reported earlier this year that 345 of 376 donated brains of deceased N.F.L. players had C.T.E. But there is a growing subset of young people, too, like the 63 in the latest study, whose lives, deaths and C.T.E. diagnoses are hidden in relative anonymity.
• What to Know About C.T.E. in Football (Ben Shpigel. NY Times) The disease has been found in the brains of more than 320 former N.F.L. players.
• C.T.E. Found for First Time in Female Pro Athlete (Victor Mather, NY Times, 7-4-23) Heather Anderson, an Australian rules football player, was found posthumously to have had the degenerative brain disease.
• Collective Force of Head Hits, Not Just the Number of Them, Increases Odds of C.T.E. ( Ken Belson and Benjamin Mueller, NY Times, 6-20-23) The largest study of chronic traumatic encephalopathy to date found that the cumulative force of head hits absorbed by players in their careers is the best predictor of future brain disease. The scientific journal Nature Communications added a critical wrinkle: A football player’s chances of developing chronic traumatic encephalopathy, or C.T.E., are related to the number of head impacts absorbed, but also to the cumulative impact of all those hits.
• Brain Disorders A to Z (Brain and Life) An excellent list, with links: Alzheimer's disease, Amyotrophic Lateral Sclerosis (ALS), autism, brain tumor, cerebral palsy, concussion, dystonia, epilepsy, essential tremor, migraine, multiple sclerosis (MS), myasthenia gravis, Parkinson's disease, peripheral neuropathy, restless leg syndrome (RLS), sleep apnea, spinal cord injury, stroke, traumatic brain injury.

• I Lost My Life in 2006 (Judith Hannah Weiss, Salmagundi,2006) "This is my brain. No, this is my brain on brain injury." What life was like after a drunk driver slammed into the parked car in which she sat.

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• Alive Inside: How a Houston hospital restores patients with severe brain injuries (Part 1 of story by Mike Hixenbaugh,multimedia by Mark Mulligan, Houston Chronicle, 11-1-17) Across the country each year, thousands of people are wrongly labeled unconscious after suffering severe brain injuries....Only a small number of people recover after a traumatic brain injury, such as a gunshot to the head.... Even fewer get better after their brain has been starved of oxygen for more than a few minutes, what doctors call an anoxic brain injury, because that type of injury causes more widespread damage, affecting virtually every brain cell.... Among the survivors, a few, including Nick Tullier, make it to a Houston rehab hospital, where those with even the worst prognoses get a shot at recovery — and where some families learn loved ones once thought as good as dead are still...ALIVE INSIDE...Doctors here, at TIRR Memorial Hermann, are among the best in the country at treating patients with so-called disorders of consciousness. In the same series: Trapped inside (Houston Chronicle, 12-2-17) There's a time to live and a time to die - but how do we prepare for what lies in between? Why I spent a year reporting on severe brain injuries (Mike Hixenbaugh, Houston Chronicle, 12-1-17) The stories told in this series raise serious questions about the standard treatment offered to people who've suffered severe brain injuries in the U.S.
---Part 2: Rebirth. Consciousness reborn: Doctors often miss the signs
---Part 3: Baby steps. Rehab. Tests. Will. Endurance. Doctors realize 'the brain is not hardwired'
---Part 4: Life worth living. Can patients find new meaning in life? (all by Mike Hixenbaugh, Houston Chronicle, 12-1-17)

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• Focus on Traumatic Brain Injury Research, information page of the National Institute of Neurological Disorders and Stroke (NINDS)
• Lasting Impact (Reveal, Center for Investigative Reporting, co-produced with PRX, rebroadcast 7-27-19) All 50 states have laws to protect high school athletes from concussions, but are they keeping kids safe? Reveal follows a star quarterback in Oregon whose school followed protocol, but concussions caught up with him in a way no one saw coming. Plus, a visit to a community that believes the benefits of football are worth the risk of concussions.
• Traumatic Brain Injuries Are Tied to Dementia (Nicholas Bakalar, NY Times, 4-10-18) T.B.I. has a wide range of severity. It extends from a mild sports concussion — an elbow to the head in a basketball game, for example — that results in very brief or no unconsciousness and no structural harm to the brain, to the most severe brain injuries that can cause extended unconsciousness, coma or even prove fatal. "After adjusting for medical, neurological and psychiatric illnesses, they found that compared with people who had never had a T.B.I., those who had had any were at a 24 percent increased risk for dementia, and those who had had five or more had nearly triple the risk. Even a single mild T.B.I. increased the risk by 17 percent." The study, in Lancet Psychiatry, used Danish health databases (its national health system makes possible exploring connections in far-reaching way).
• TBI Survivors 'Need an Advocate' (Martin (Tony) H Zink III, MedPage Today, guest posting on John Gever's Striking a Nerve blog, 2-8-14) Zink suffered a severe brain injury in a car accident in 1993 shortly after finishing medical school. Here he tells the story of the acute phase of his recovery, concluding with lessons or issues probably universal to all TBI survivors.
• Over My Head: A Doctor's Own Story of Head Injury from the Inside Looking Out by Claudia L. Osborne. A 45-year-old doctor and clinical professor of medicine, describes the aftermath of a brain injury eleven years ago which stripped her of her beloved profession. For years she was deprived of her intellectual companionship and the ability to handle the simplest undertakings like shopping for groceries or sorting the mail. Her progression from confusion, dysfunction, and alienation to a full, happy life is told with restraint, great style, and considerable humor.

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• TBI Up Close and Personal (Maria Romanas, MedPage Today, guest posting on Gever's Striking a Nerve blog, 1-31-14) Her first-person account of what it's like to live with chronic symptoms resulting from traumatic brain injury, unedited except for style. "As a last ditch effort, I took a leave of absence and went through an 8-week intensive holistic cognitive rehabilitation program (HCR) with an expert neuropsychologist, Larry Schutz, PhD. He trained me how to use my conscious mind to bypass the networks that no longer work properly." Schutz's book: Head Injury Recovery in Real Life. She also refers to Evidence-based cognitive rehabilitation: updated review of the literature from 2003 through 2008. (Arch Phys Med Rehabil. 2011 Apr, on PubMed.gov) "There is substantial evidence to support interventions for attention, memory, social communication skills, executive function, and for comprehensive-holistic neuropsychologic rehabilitation after TBI. Evidence supports visuospatial rehabilitation after right hemisphere stroke, and interventions for aphasia and apraxia after left hemisphere stroke."
• Aaron Hernandez Had Severe C.T.E. When He Died at Age 27 (Ken Belson, NY Times, 9-21-17) The brain scan came as a surprise even to researchers who for years have been studying the relationship between brain disease and deaths of professional football players. The former Patriots tight end Aaron Hernandez was convicted of murder in 2015. He was found dead in his prison cell in April. C.T.E., or chronic traumatic encephalopathy, has been found in more than 100 former N.F.L. players, some of whom committed suicide, according to researchers at Boston University. C.T.E. is often marked by problems with controlling aggression and impulses, and some degree of dementia, as well as mood swings, lapses in judgment and a disorganized manner.
• After the Cheering Stops: An NFL Wife’s Story of Concussions, Loss, and the Faith that Saw Her Through by Cyndy Feasel with Mike Yorkey. Cyndy Feasel was married for twenty-nine years to NFL lineman Grant Feasel, who was discovered after his death to have developed CTE—a progressive degenerative brain disease—from the repeated concussions he received playing football. She is committed to raising awareness of CTE and the dangers of repetitive head injury. A must-read for parents whose children want to play football.
• League of Denial: The NFL's Concussion Crisis (Frontline, PBS, 10-11-13) The National Football League, a multibillion-dollar commercial juggernaut, presides over America’s indisputable national pastime. But the NFL is under assault: thousands of former players have claimed the league tried to cover up how football inflicted long-term brain injuries on many players. What did the NFL know, and when did it know it? (See Timeline: The NFL’s Concussion Crisis) In a special two-hour investigation, FRONTLINE reveals the hidden story of the NFL and brain injuries.
• Is the NFL using the CDC to ‘manufacture doubt’ on head injuries? (Michael Joyce, Health News Review, 1-31-18) Does the NFL partnering with the CDC to get the word out about those injuries represents a conflict of interest. “They try to purchase credibility from a well-respected public health institution, because they’ve lost theirs,” he said. “But just like tobacco, pharma, and the lead, vinyl, and asbestos industries — they use questionable or incomplete evidence for their own commercial interests....“The emphasis is on the management side and it fails to highlight the consequences of repetitive, hidden, subconcussive trauma that can come from every day contact. It also deflects responsibility on to players and their families, and suggests taking these steps will mitigate the risks when they won’t. It’s never been proven that brain damage to players can be prevented through education or post-injury management alone.”

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• What a new study teaches us about football and brain disease (PBS Newshour, WNYC, 7-26-17)
• Ghosts of Football Future (RadioLab, and do read the comments) Sports writer Chuck Klosterman tells us about a sort of con at the center of the game that, he thinks, has made it the most popular sport in the US. And he points us to a deep conflict at the heart of football, even for the people who love it dearly.
• An Olympic Hockey Hero, a Violent Crime and the Specter of Brain Trauma (John Rosengren, Washington Post, 2-12-2020) Forty years ago, Mark Pavelich played a crucial role in the U.S. hockey team’s triumph over the Russians. Was there a steep cost for his lifetime on the ice?
• Study: CTE Found In Nearly All Donated NFL Player Brains (Tom Goldman, All Things Considered, NPR, 7-25-17) Dr. Ann McKee: "The fact that we were able to gather this many cases [in that time frame] says this disease is much more common than we previously realized...."There's so much discussion of this disease not existing that funding agencies are reluctant to consider this a real neuro-degenerative disease. But I think we've proven beyond a doubt this is."<
• How to Rebuild a Broken Brain (Mike Riley, FreeThink, 8-23-16) "They wheeled Jordan’s body — which at this point was entirely reliant on life-support machines — into an OR, and removed roughly a third of his skull in an attempt to relieve the pressure. They placed the removed piece of skull inside Jordan’s abdomen to keep the bone alive, and crossed their fingers. Seven hours later, Jordan woke up." Jordan Riley shares how he went from brain dead to a director of business analytics. In eight not-so-easy steps.
• Brainline.org (preventing, treating, and living with traumatic brain injury). See especially Ask the Expert Q&As

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• The Final Five Percent (Tim Requarth, Longreads, Oct. 2019, a 27-minute read) When a brain injury leads to a personality change and then prison time, a neuroscientist wonders if his brother could have been saved."At first, the doctors assured us that this inappropriate behavior was a passing recovery phase of traumatic brain injury, or TBI. The lewd remarks eventually subsided, but his behavior took another ominous turn....Because I had wanted courtroom neuroscience to save my brother, I avoided considering its implications. I’d never questioned science’s inheritance of what society considered “normal” and “abnormal” behavior."
• Living with Brain Injury (Brain Injury Association of America) Click on other subtopics along left side.
• Traumatic Brain Injuries (ConsumerDangers.com)
• Toledo-area veteran perseveres after 2004 traumatic brain injury (Viviana Hurtado, anchor, WTOL, 11-11-15) Award-winning story about Army veteran Matthew Drake, Northwest Ohio’s first service member injured in Operation Iraqi Freedom. As he was the lone survivor of an IED attack, his eleven-year road to recovery was miraculous. The story won the prestigious Edward R. Murrow Award. His mother wrote a memoir about his injury and recovery: Just As He Is Right Now: A Mother's Memoir on the Price of Freedom and the Power of Hope
• Few Retired N.F.L. Players Opt Out of Proposed Concussion Settlement (Ken Belson, NY Times, 11-3-14)
• Damage Assessment (Patrick Hruby, WaPo Magazine, 9-2-2020) The quest to detect the degenerative brain disease CTE in the living and what it could mean for football’s concussion crisis. People in football are making a similar choice right now with covid: “At what point is it not safe for me to play, or let my kids play, this sport?” Sean Morey says. “I love football. Unapologetically. But you don’t want to sacrifice more than you’re willing to in order to compete.” A viable CTE test for living people could prompt a deeper and more widespread reckoning within football. What happens when someone scans the brains of every player on an NFL, college or high school roster?
• Six things ‘Concussion’ the movie won’t tell you (but brain experts will) (Emma Court, MarketWatch, 1-12-16) Chronic Traumatic Encephalopathy (CTE) is a brain disease found in patients with a history of repetitive hits to the head. It is connected to concussions, but scientists don't yet know the exact nature of the relationship. Still, the functions a concussion impairs—cognition, thought, mood, balance and more—certainly make life more difficult. Years of exposure to trauma to the head do appear to correlate with a CTE diagnosis, said Dr. Jamshid Ghajar, a neurosurgery professor at Stanford School of Medicine and president of the Brain Trauma Foundation. But there is no causal relationship between the severity of a concussion or number of concussions and CTE, he said.
• Into the Shadows: An Illustrated Memoir of Brain Injury by Krista J. Breithaupt. "The physician on duty saw me for a few minutes and deduced I had some kind of virus or a stiff neck from an awkward sleep. He did not do either of the two tests which could diagnose the beginning of a significant blood vessel bleeding in my brain. The only definitive tests for diagnosing bleeding in the brain are a spinal tap or a brain scan. This kind of bleeding often starts with a smaller amount of bleeding (called a sentinel bleed) which is later followed by a complete eruption in the vessel which is fatal in about 80% of cases. The physician on duty at the clinic did not suspect any neurological event, and sent me home. Because I was conscious and talking fairly normally when the physician saw me at the clinic, he did not take care to rule out the most serious possible cause for my symptoms."
• Nascar’s Pockets Seem Deep Enough for Retirees’ Concussion Worries (Juliet Macur, NY Times, 8-4-14) “The N.F.L. thing really opened my eyes to how dangerous head injuries really are... I realized that I could wake up tomorrow and not know who I am.”
• Many Ex-Players May Be Ineligible for Payment in N.F.L. Concussion Settlement (Ken Belsn, NY Times, 10-17-14)
• Rehospitalization Rates: 20% for Individuals with Traumatic Brain Injuries (Brain Injury Association of America)
• A Central Park Victim Recalls 'When I Was Hurt,' and Her Healing . Anemona Hartocollis on overcoming traumatic brain injury (NY Times, 6-8-06)

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• Bret, Unbroken (Steve Friedman's wonderful story, Runner's World, 5-3-13). His brain and body shattered in a horrible accident as a young boy, Bret Dunlap thought just being able to hold down a job, keep an apartment, and survive on his own added up to a good enough life. Then he discovered running.
• Traumatic Brain Injury and Post Concussion Syndrome (PCS) (a NeuroTalk online support and discussion group)
• The NHL’s Deadly Denial: The Dangers of Hockey and CTE YouTube video, 15 min.,The Atlantic, 4-25-19) The National Hockey League won't admit that hockey players bashing each other in fights during games (encouraged to do so to entertain the fans) is a cause of CTE.
• How a Brain Injury Ruined My Favorite Fruit (Deborah Brandon, Narratively, 10-2-18) "I have a vascular disorder; scattered throughout my brain are tangles of malformed blood vessels. Two of them bled, causing brain damage and a variety of symptoms. I underwent multiple surgeries to prevent future bleeds. The surgeries themselves caused damage, too. Years later, my symptoms range from vertigo and loss of balance to poor short term memory and trouble with sequential thinking. I am also hypersensitive to sensory input.I knew recovery would be long and challenging, but the littlest changes took me by surprise."
• FDA Clears First Blood Test to Aid in Concussion Diagnosis (Megan Brooks, Medscape, 2-14-18) See also FDA approves first blood test to aid in diagnosis of concussions (Ike Swetlitz, STAT, 2-14-18)
• Grateful to Be Back. Actress Kim Lowry returns to the stage after recovering from a traumatic brain injury. (Sherilyn Forrester, Tucson Weekly, 8-2-12)
• Educational fesources, Brain Trauma Foundation (sources of information on TBI)
• Parents of Young Athletes: Protect Your Child’s Brain in 8 Steps (Ingrid Wickelgren, Scientific American, 8-5-14)
• Being with Rachel: A Personal Story of Memory and Survival by Karen Brennan. How she coped with the severe brain injury of her 21-year-old daughter (in a motorcycle accident), and the long road to reconstructing her life and memory.
Brain injury survivors are storytelling their way to recovery (Ben Graham, The Guardian, 6-4-15). The Who Are You Now? project has helped brain injury survivors develop their literacy and speech skills. By narrating their own experiences, brain injury survivors are tackling discrimination, developing their skills and building confidence
• Who Are You Now? (Life stories of brain injury survivors)
• To Love What Is: A Marriage Transformed by Alix Kates Shulman. A beautifully written memoir and the compelling story of a husband and wife facing his traumatic brain injury and her transformation into caregiver. Shulman provides clear explanations of what happens when there is traumatic brain injury (TBI), and works into the story some of the tips she picks up along the way of how to take care of herself and hang on to at least a few hours to herself during each day. This is not presented as a how-to book, but you sure do get a sense of what you have to be prepared to do, and to give up, if something like this fall from a sleeping loft leaves someone in your family handicapped. Among other things, she has to deal with her husband's loss of short-term memory, his around-the-clock emotional dependence on her, and outbursts of anger and aggression that are especially hard to deal with because he was such a gentle person. TO LOVE WHAT IS is a slim and highly readable book, one I would not hesitate to suggest or give to anyone who has to deal with TBI (or to decide how MUCH they love that person they are thinking of marrying). (From my review on Amazon.)
• The press release that fell and hit its head Brenda Goodman, Covering Health, AHCJ, 4-22-14). "Our definition of traumatic brain injury was one in which one loses consciousness for at least five minutes or is hospitalized overnight due to symptoms associated with it for at least one night. So that’s a little more than a concussion."
• Tune In to Music Therapy's Healing Powers (Sally Abrahms). See how making and playing music helps both those with Alzheimer’s and their family caregivers. It also works for other kinds of brain damage. Watch the video of Gabby Giffords--singing song lyrics; she couldn't retrieve the same words when not singing.

• What Is Concussion? What Is Mild Traumatic Brain Injury (MTBI)? (Medical News Today 7-27-09)
• ‘Don’t Write It Off’: Advice From Brain Injury Experts After Bob Saget’s Death (Benjamin Mueller, NY Times, 2-10-22) People who find themselves alone after a significant knock to the head are at higher risk of harm. With a head injury they can lose touch with their usual decision-making capacities and become confused, agitated or unusually sleepy. Those symptoms can stand in the way of getting help.
• Protecting Athletes: Concussions (Kojo Nnandi show, with guests Stephen Haas, Juliet Macur, Robert Stern, 7-22-14). Conversations about protecting athletes from concussions often focus on football. But several incidents at this summer's World Cup triggered questions about what FIFA, soccer's governing body, does to keep players safe. Kojo explores the emerging science and policies behind debates about concussions and professional and amateur sports.
• Mild Brain Injury and Concussion (Brain Injury Association of America). See personal stories about brain injury.
• TBI Ten Years Later: A Mother's Story Continues (Dixie Fremont-Smith Coskie, for BrainLine).
• The Science Is Still Gray on CTE (Jeff Wheelwright, Discovery, 6-13-16) What exactly is chronic traumatic encephalopathy?
• Three Hard Things about Brain Injury (writer and poet Louise Mathewson's blog, 8-11-14). See also Coming Out of Hiding Through Writing, The Medicine of Writing (10-15-12), Blessings for Those with Brain Injuries (a poem).
• A Life Interrupted: Living with Brain Injury, poetry by Louise Mathewson.
• Days of Daze: My Journey Through the World of Traumatic Brain Injury by Lois Jean Thomas. The life of a clinical social worker is disrupted when she is struck by a car on a noontime walk. She tells her story of sustaining a traumatic brain injury and her struggles to cope, physically, emotionally, and spiritually.
• Caregiving for Someone with a TBI: A Unique Experience (Carolyn Rocchio, BrainLine). Her son sustained a TBI in a 1982 auto crash.

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• Brain Disorders A to Z (Brain and Life) An excellent list, with links: Alzheimer's disease, Amyotrophic Lateral Sclerosis (ALS), autism, brain tumor, cerebral palsy, concussion, dystonia, epilepsy, essential tremor, migraine, multiple sclerosis (MS), myasthenia gravis, Parkinson's disease, peripheral neuropathy, restless leg syndrome (RLS), sleep apnea, spinal cord injury, stroke, traumatic brain injury.
• Brain tumors and aneurysms (for those of us who "watch and wait," brain tumors are a chronic condition)

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COPING WITH CHRONIC ILLNESS

• Five Things I Wish I’d Known Before My Chronic Illness (Tessa Miller, NY Times, 2-18-19) #5: Support is everything.
• 10 steps for coping with a chronic condition (Harvard Medical School) It pays to organize your approach to heart disease or any chronic medical problem.
• Coping with a diagnosis of chronic illness (American Psychological Association)
• Top 10 Chronic Conditions in Adults 65+ and What You Can do to Prevent or Manage Them (National Council on Aging) The conditions: Chronic obstructive pulmonary disease (COPD), Alzheimer’s disease and dementia, depression, heart failure, chronic kidney disease (CKD), diabetes, ischemic heart disease (or coronary heart disease), arthritis, high cholesterol, hypertension (high blood pressure).
• Helping Children Cope with Chronic Illness (American Academy of Child & Adolescent Psychiatry)
• How to Report with Accuracy and Sensitivity on Contested Illnesses (Julie Rehmeyer, TheOpenNotebook, 1-26-21) Julie Rehmeyer had long trusted science to have--if not answers---the tools and foundation to interrogate questions. But following her chronic fatigue syndrome diagnosis in 2006, she writes, "This scientific grounding fell away from me."In a reported essay, Rehmeyer describes her personal journey with a contested illness, made even more relevant today as COVID long-haulers sometimes struggle to find acceptance in the scientific and medical communities. Journalists, she says, can play a critical part in framing and contextualizing patients' experiences, learning from and avoiding the mistakes that have left others feeling marginalized. Here, Rehmeyer provides a guide.
• Chronic Disease Self-Management Programs (National Council on Aging)
• Self-Management Resource Center (SMRC) "Millions of adults live with one or more chronic health conditions. Our programs help people and their caregivers manage their symptoms, improve their quality of life, and reduce healthcare costs."
• Chronic Disease Management (National Council on Aging). NCOA offers many specific resources for older adults and their caregivers (e.g., Medicare Coverage of Outpatient Therapy Services, Differences Between Original Medicare and Medicare Advantage, Questions to Ask Before Joining a Medicare Advantage Plan, Part D Plan Consumer Checklist). Advice: explore the NCOA website for hidden gems.

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COPING WITH INVISIBLE and/or CHRONIC ILLNESSES
including ADHD, autoimmune diseases, chronic fatigue syndrome (CFS), diabetes, fibromyalgia, rheumatic arthritis

Because I write about illness and medical research and the professionals who try to help those with medical problems, I find myself wanting to recommend links that don't really fit into the other categories on this site, or even into the concept of the site. And yet, those who come here are often grappling with the problems of chronic and/or invisible illnesses, which are not apparent to others, or rare illnesses or conditions, which are often difficult even to diagnose, much less treat. So I am going to add this category and hope that you will tell me about useful sites to link to -- so that you all can help each other. With invisible, or concealed, chronic illnesses (ICI or CCI), the kind of mutual support available directly or indirectly through the Internet is particularly important.

What are invisible illnesses? Illnesses that aren't apparent, so you expect the people who have them to be functioning normally--except they can't, because something about their illness limits them, and it may well be fatigue. Invisible chronic illnesses include anxiety and panic disorders, autism, bipolar disorder (manic depression), chronic fatigue syndrome, depression, digestive disorders such as Crohn's disease, fibromyalgia, Gulf War Syndrome, irritable bowel syndrome (IBS) lupus, migraine headaches, multiple chemical sensitivity, post-traumatic stress disorder (PTSD), rheumatoid arthritis, and various other health problems that cause multiple hospitalizations and are often characterized by waxing and waning symptoms. I have had time to provide coverage of only some of these diseases; I will do more (and organize the links better) as time and energy allow. Meanwhile, I hope some of this is helpful!

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• Invisible Disabilities Association spreads awareness about illness, pain, injury and disabilities
• Invisible Illness Resources (Annual Women's Conference, UC San Diego)
• Beyond the Diagnosis (Patty Weltin) unites art and science to inspire research and innovation of treatments for people living with orphan and neglected diseases. Facebook: BeyondTheDx
• Invisible Illness conference (Blogtalk radio)
• A Life Touched by Profound Illness: A Conversation with Meghan O’Rourke (Yvonne Conza, LA Review of Books, 4-11-22) By the author of The Invisible Kingdom: Reimagining Chronic Illness "I live with POTS, hypermobile Ehlers-Danlos syndrome, autoimmune thyroiditis, the effects of tick-borne illness, and more. But the strangest thing about this quest was how invisible it was to many of my friends and colleagues. During my darkest days, I felt that my experience was entirely invisible to others in ways that seemed to erase me....But it seemed no one had a biological explanation for the fatigue I felt, or medical interest in what my brain fog meant.

"It was quite odd to see how often doctors psychologize the subjective experience of illness, especially when the patient testifying about her problems is a woman. Yet huge numbers of people with conditions like mine were not getting diagnosis in a timely way; they were being dismissed or turned away by doctors."

"Our sickness is shaped by the society around us as much as by our biology. And autoimmune diseases are on the rise in developed Western nations, it appears, in no small part because of social changes — changes to the environment, our increasing use of chemicals, changes we have made to food production. So, the sick person is not the only author of her narrative. Her illness experience is shaped by policy, by her own expectations, and by the way that others see her and her disease."
• Overcoming Self Defeating Behaviors When You are Chronically Ill (Invisible Illnesses conference, 2008)
• Long Waits And Long Odds For Those Who Need Social Security Disability (Alex Smith, NPR, 6-13-17) In the U.S., less than half of all people who apply for disability benefits — about 45 percent — are ultimately accepted....Getting a hearing takes an average of nearly 600 days.... It may become even harder for people like Hashmi, whose disability [from Lupus] is difficult to actually see or measure.

Chronic Illness Initiative (DePaul University School for New Learning, Facebook page)
Reaching Students With Chronic Illness (Elizabeth Redden, Inside Higher Education, 11-8-07).
National Invisible Chronic Illness Awareness Week
• The ICI Experience, a blog about all aspects of the experience of living with Invisible Chronic Illness (ICI), with a focus on Endometriosis and Pelvic Floor Dysfunction.

"My genes, my love, are rubber bands and rope -- make yourself a structure you can live inside." ~Aimee Bender

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BOOKS ABOUT PATIENTS WITH CHRONIC INVISIBLE ILLNESS

• Bolen, Jean Shinoda. Close to the Bone: Life-Threatening Illness As a Soul Journey
• Donague, Paul H., and Mary Elizabeth Siegel. Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness
• Edwards, Laurie. Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties
• Fox, Michael J. Always Looking Up: The Adventures of an Incurable Optimist (about finding the opportunities that arise--including a new closeness with his family--when struck by a disease like Parkinson's)
• Freed, Rachael. Freed's, Heartmates: A Guide for the Spouse and Family of the Heart Patient (a self-help book for women dealing with chronic and life-threatening illness)
• Groopman, Jerome. The Anatomy of Hope: How People Prevail in the Face of Illness
• Hallowell, Edward M.and John J. Ratey. Driven To Distraction: Recognizing and Coping with Attention Deficit Disorder from Childhood Through Adulthood (or, for those who have trouble reading, the small-byte-sized Answers to Distraction. Both available as books on tape. Read an excerpt from their book Delivered from Distraction: Getting the Most out of Life with Attention Deficit Disorder. The authors, both professionals, also have ADD.
• Hartwell, Lori. Chronically Happy: Joyful Living In Spite Of Chronic Illness
• Hathaway, Katharine Butler. The Little Locksmith: A Memoir In 1895 a specialist straps five-year-old Katharine, then suffering from spinal tuberculosis, to a board with halters and pulleys in a failed attempt to prevent her being a "hunchback." This memoir charts Katharine's struggle to transcend physical limitations and embrace her life, her body and herself.
• Hodgdon, Linda A. Visual Strategies for Improving Communication : Practical Supports for School & Home (helpful for students with autism)
• Jergen, Robert. The Little Monster: Growing Up With ADHD by Robert Jergen. (Read the preface)
• Johnson, Hillary. Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic
• Jones, Sue. Parting the Fog: The Personal Side of Fibromyalgia/Chronic Fatigue Syndrome
• Kabat-Zinn, Jon. Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness. Kabat-Zinn, founder of the Stress Reduction Clinic at the University of Massachusetts Medical Center, is perhaps the best-known proponent of using "practiced mindfulness" to control and calm our responses without blunting our feelings, to help patients deal with stress and chronic illness.
• Kasper, Edward K. and Mary Knudson. Living Well with Heart Failure, the Misnamed, Misunderstood Condition
• Kelly, Julie W. Taking Charge of Fibromyalgia: Everything You Need to Know to Manage Fibromyalgia, fifth edition (get whichever is most recent, for updates)
• O’Rourke, Meghan. The Invisible Kingdom: Reimagining Chronic Illness
• Sacker, Ira M. Dying to Be Thin:Understanding and Defeating Anorexia Nervosa and Bulimia--A Practical, Lifesaving Guide
• Shinoda, Jean. Close to the Bone: Life-Threatening Illness As a Soul Journey, on how living with the threat of death can take us to a deeper level (with a section about forming circles in time of crises)
• Silver, Marc.Success with Heart Failure: Help and Hope for Those with Congestive Heart Failure (and check out the low-salt, no-salt cookbooks while you are looking at reviews of this book)
• Sveilich, Carol. Just Fine: Unmasking Concealed Chronic Illness And Pain (a "comfort" book, more than a "coping" book, writes reviewer Margy Squires)
• Teitelbaum, Jacob. From Fatigued to Fantastic (a guide to treating chronic fatigue and fibromyalgia)
• Torrey, E. Fuller. Surviving Schizophrenia: A Manual for Families, Consumers, and Providers ("comprehensive, realistic, and compassionate"--required reading, well-written, and frank about people and approaches that have not benefited patients with this problem)
• Velasquez-Manoff, Moises. An Epidemic of Absence: A New Way of Understanding Allergies and Autoimmune Diseases
• Wallack, Max and Carolyn Given Why Did Grandma Put Her Underwear in the Refrigerator? (an explanation of Alzheimer's disease for children)
• Weintraub, Pamela. Cure Unknown: Inside the Lyme Epidemic
• Wells, Susan Milstrey. A Delicate Balance: Living Successfully with Chronic Illness. Milstrey’s problems: Sjögren's syndrome (an autoimmune disease that dries the eyes and mouth), fibromyalgia (a painful muscle disorder), and interstitial cystitis (a chronic inflammation of the bladder).

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ALS (Lou Gehrig's disease, Amyotrophic lateral sclerosis,

a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord)

First, a few books about ALS:

• A Life Impossible--Living with ALS: Finding Peace and Wisdom Within a Fragile Existence by Steve and Jeff Duncan.

In 2011, three years after leaving the NFL, Steve Gleason was diagnosed with ALS, a terminal disease that takes away the ability to move, talk, and breathe. Doctors gave him three years to live. He was thirty-three years old. He is now ten years past his expiration date. See article: 'A Life Impossible' chronicles all aspects of Steve Gleason's incredible life (John DeShazier, New Orleans Saints, 5-9-24)
• Night (Tony Judt, NY Review of Books, 1-14-10). "In effect, ALS constitutes progressive imprisonment without parole....Imagine for a moment that you had been obliged instead to lie absolutely motionless on your back—by no means the best sleeping position, but the only one I can tolerate—for seven unbroken hours and constrained to come up with ways to render this Calvary tolerable not just for one night but for the rest of your life." A powerful depiction of what, physically, it is like to lose the use of the body while you still have full use of your mind (in his case, one of the finest minds of our time), by the author of The Memory Chalet, a memoir.
• Luckiest Man: The Life and Death of Lou Gehrig by Jonathan Eig. This excellent biography of a baseball great ends with how he dealt with ALS during the final years of his life.
• ALS diagnosis inspires family to live 'magical year' (YouTube video). Journalist Susan Spencer-Wendel was in her prime when she got a devastating diagnosis: ALS. Knowing she only had a few years to live, she and her family started tackling all the items on her bucket list. "Don't cry because it's over; smile because it happened," she said. With one finger, she typed/wrote the book Until I Say Good-Bye: My Year of Living with Joy .
• We Know How This Ends: Living While Dying by Bruce H. Kramer with Cathy Wurzer ("a dignified, courageous, and unflinching look at how acceptance of loss and inevitable death can lead us all to a more meaningful and fulfilling life.")
• Rowing Without Oars: A Memoir of Living and Dying by Ulla-Carin Lindquist. A short and powerful memoir of discovering, as a 49-year-old mother of four, that she has ALS, a illness She is in excellent physical shape when she notes a weakening of muscular strength and senses there is a problem. A well-known Swedish journalist, she has produced a frank and informative account of her experience, which rather than feeling grim is a reminder to enjoy life, as she did in her final months. An excellent way to get an overview of how the disease might affect one's life.
• The Good Short Life by Dudley Clendinen (NYTimes, 7-9-11). Living with Lou Gehrig's disease is about life, when you know there's not much left. And Writer Dudley Clendinen has chosen not to go to the great expense and limited potential of extending his life--but to enjoy what he can of it, while he can. He learned he had the disease when he was 66, and Maryland Morning, an NPR news station, has been airing conversations with him about how he and his daughter Whitney have been dealing with the disease and its implications. Listen to the podcasts
• I Remember Running: The Year I Got Everything I Ever Wanted -- and ALS (Darcy Wakefield's memoir-- a good voice, and good storytelling)
• An Open Letter About ALS (Tony Judt, NY Review of Books)
• Tales from the Bed: A Memoir (Jenifer Estess as told to Valerie Estees, foreword by Katie Couric)

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Then, a selection of articles and stories about living with ALS:
• Patient Voices: A.L.S. (New York Times). Amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, affects parts of the nervous system that control voluntary muscle movement. The average life span of someone with A.L.S. is five years after diagnosis. Here, six men and women speak about how their lives have changed as a result of this devastating illness.
• Why is it so hard to cure ALS? (Fernando G. Vieira, TEDEd) ALS affects about two out of every 100,000 people worldwide. When a person has ALS, their motor neurons - the cells responsible for all voluntary muscle control in the body - lose function and die. Vieira shares what we know (and don't know) about ALS.
• ‘Lou Gehrig’s Disease? I don’t even like baseball.’ Comic Bob Smith on living with ALS (Tim Teeman's piece for The Daily Beast, 10-17-16, from Teeman's website) "Slowly, his body is closing down. He cannot speak. He cannot walk. He now cannot use his hands to write. His mind, however, is as it always has been: he understands everything, he just cannot respond to what is said to him. ALS is an imprisoning, living hell.
“Navigating a treacherous disease requires the same skills as a hiker,” Smith writes. “With a life-threatening illness, you have to treat the Angel of Death like he’s a skunk. Avoid getting too close, or you’ll be stinking like a rotting corpse....
"Because of the diminishment of his physical capabilities, this is no ordinary interview: Smith raises a foot and spells out his answers, as Zam holds a see-through plastic board with the letters of the alphabet in small, clustered groups, with ‘yes’ and ‘no’ as two boxed options of their own."

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• What to know about the polarizing ALS drug headed for FDA scrutiny (Damian Garde, STAT News, 9-21-23) Years of polarizing scientific discourse and bruising online debate will come to a head next week when advisers to the Food and Drug Administration weigh in on NurOwn, a potential treatment to slow the progression of ALS that has bitterly divided physicians and patient advocates.To some physicians, the drug’s failure to show significant benefits in clinical studies leaves approval out of the question.
---Under protest, FDA to convene advisory panel to review controversial cell therapy for ALS (Adam Feuerstein, STAT News, 3-27-23)
• Amylyx may get rare second chance with FDA panel(Kerry Dooley Young, Covering Health, AHCJ, 7-26-22)
• For A.L.S. Patients, a Hopeful Drug That Is Out of Reach (Angelina Fanous, Well, NY Times, 2-5-15). At the time, the drug Rilozule was the only treatment on the market for A.L.S., and it extended a patient's life only a few months. A new A.L.S. medication called GM6 has shown in a 12-person trial to dramatically slow down the progression on the disease. At this point Genervon Biopharmaceuticals was seeking accelerated approval, hoping the F.D.A. would make it available to the 30,000 patients hoping to try it.
• Book Thoughts from Bed ( Michelle Melland's blog). See Fully paralyzed, Kansas City woman writes weekly book reviews — using only her eyes (Eric Adler, Kansas City Star, 4-25-17) ALS robbed Michelle Melland, 50, of Kansas City of her ability to move, speak and breathe on her own, but has no effect on her sharp mind and does not stop her living a fulfilling life. Using eye scan technology, blinking her eyes to write words, Melland writes a weekly book review which she posts on her blog. "A curious and still little understood fact about ALS is that military veterans, whether they served at home or abroad, tend to suffer the disease at twice the rate of the civilian population.""This blog is what happens when a woman who is productive by nature gets confined to a hospital bed. I want to provide readers with some book recommendations and I hope they do the same for me!"
• An Appalachian odyssey: Hunting for ALS genes along a sprawling family tree (Eric Boodman, STAT, 8-5-18) "In his hometown of Ewing, Va. — just east of the state’s mountainous meeting point with Kentucky and Tennessee — a handful of his relations had had the same thing, and they knew it as cancer of the throat. They lost the ability to chew, swallow, and speak, they lost weight, and then they died." This is the story of two researchers and what Boodman describes "as their 'almost ferocious obsession' to learn why ALS has for generations stricken families in and around the town of Ewing, Va. It is also a story of the unseen, painstaking, and often unrewarded legwork involved as modern medicine tries to comprehend, and ultimately treat, inherited illnesses."

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• A family with an astonishing rate of Alzheimer’s disease may harbor a powerful new gene (Michele Cohen Marill, STAT, 9-11-17) FUS-linked ALS is very rare, but this form of the disease runs thicker in the area around Ewing, Va., than just about anywhere else.
• Trials for potential ALS treatment using stem cells spark cautious hope (Jonathan Saltzman, STAT News/Boston Globe, 4-5-18) For subscribers only.
• Forgiving the Body: Life with ALS (On Being with Krista Tippett, interviewing Bruce Kramer, Minnesota Public Radio) From the moment of his diagnosis with ALS, Bruce Kramer began writing — openly, deeply, and spiritually — about his struggle, as he puts it, to live while dying. He died on March 23, 2015, while we were in production on this show. His words hold abiding joy and beauty, and reveal an unexpected view opened by this disease.
• Last Stand (E. Wesley Ely, Pulse, 7-24-15) This may help you think twice about "quality-of-life" issues.
• In the Face of A.L.S., Simon Fitzmaurice Finds His Fire Inside (Kathryn Shattuck, NY Times, 2-22-17) 'Mr. Fitzmaurice was writing with his hands when he began the script for “My Name Is Emily.” By the time he was finished, he was writing with his eyes....A tracking device captures the movement of Mr. Fitzmaurice’s eyes as they rest on a letter or phrase on a smartphone-like keyboard, causing the characters to appear on a screen. When his thoughts are complete, he focuses on a “speak” button, and a computerized voice vocalizes his words."
• ...As long as we both shall live She just learned he has ALS. Then they proved there’s one thing it can’t take away "About 10 percent of its victims will live with it for longer than a decade. Five percent will make it past two decades. Stephen Hawking has lived a half-century with it....Eric, diagnosed two months ago, is one of the unlucky ones. The condition, which cripples nerve cells in the brain and spinal cord and eats muscles right off the bone, has progressed with such quickness that he marks his deterioration by the week." (Terrance McCoy, Wash Post, 5-24-15)

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• The Beauty Revealed by ALS. Bruce Kramer chronicled his journey in over 30 interviews with Minnesota Public Radio's Cathy Wurzer and on his blog, Dis Ease Diary
• "Most doctors will tell you three to 10 years, but nobody really knows." (StoryCorps) Listen or read transcript. Patricia Mishler discusses with her daughters what it is like living with ALS, and her thoughts on knowing that the disease will one day take her life.
• A Historian's Long View On Living With Lou Gehrig's (Terry Gross interviews Tony Judt, NPR, 3-29-10). Listen or read transcript. "In 2008, historian Tony Judt was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig's disease. ALS is a progressive motor-neuron disease that causes the central nervous system to degenerate. Over time, patients lose the ability to move their bodies, but retain full control over their minds. Judt describes the effects of the disease as 'progressive imprisonment without parole.'"
• About ALS (ALS Association)
The late Paul Aiken's twitter feedn=2 twitter feed. Paul, who at 54 and executive director of the Authors Guild, learned he had ALS and decided to make his health records public, as part of a campaign to disseminate all available information about the disease.
• Five myths about AL (Jeffrey D. Rothstein, WaPo, 8-22-14)
• Ice Bucket Challenge (Wikipedia entry includes criticisms of this fundraising event)
• Scientists are crediting the ALS Ice Bucket Challenge for breakthroughs in research (Robert Gebelhoff, Wash Post, 8-19-15). "...one year and more than $220 million in donations later, scientists at Johns Hopkins are claiming a major breakthrough in ALS research and are partly crediting the success to the massive influx of public interest.... the millions of dollars brought into the field has given researchers the financial stability to pursue "high risk, high reward" experiments." However, Ice bucket challenge participants keep getting hurt.

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• In death, a promise for the future. As her world diminished, Elizabeth Uyehara signed her body over to researchers to help unravel the mystery of Lou Gehrig's disease. (Thomas Curwen, Los Angeles Times, 8-28-10, on the course of Uyehara's ALS and on what happens when organs are donated for science)
• Petition (closed now): FDA Accelerated Approval of Genervon's GM604 for Use In ALS
• ALS Today , ALS Therapy Development Institute
• MND Association, the Motor Neuron Disease Association (MNDA). See, for example, Newly Diagnosed?
• Team Cure ALS
• ALS Public Policy (advocacy)
• MDA ALS Caregiver's Guide
• My ALS Remission Story by Ernie Schmid, who started Paul Aiken (see above) on his search for help.
• Loss of Speech Evokes the Voice of a Writer--A.L.S. Rewrites a Retiree's Dream (Peter Applebome, NY Times, 3-6-11). “As my muscles weakened, my writing became stronger,” he wrote recently in an unpublished essay. “As I slowly lost my speech, I gained my voice. As I diminished, I grew. As I lost so much, I finally started to find myself.”
• Mindfulness meditation offers help with the travails of chronic illness (The Conversation, 6-10-11). A mindfulness-based stress reduction (MBSR) program originally used for managing chronic pain and stress-related disorders has since helped people with cancer, chronic pain, stress, anxiety, depression, fibromyalgia, psoriasis, disordered eating and other conditions.
• Genetic mutation linked to inherited forms of ALS, dementia (NIH News, 9-28-11)

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Aphasia

• When the words won’t come. This is my life with aphasia. (Judith Hannah Weiss, Washington Post, 2-25-23) A brain stuck on static. The disorder results from damage to the brain that affects speech and language comprehension, and it’s far more common than many realize. A first-person account.

"Tests say they quantify cognition, but I would say they quantify only what we can say, which is not the same as what we know or feel. We need words for that, plus neural functions, synapses and soul."

"At least 180,000 Americans are diagnosed with aphasia every year, and it’s estimated that some 2 million Americans have it; it’s more prevalent than Parkinson’s disease, cerebral palsy, multiple sclerosis, muscular dystrophy and Lou Gehrig’s disease combined. Yet the condition remains largely in the shadows, maybe in part because so few of us with it can tell others about the challenges we face. Actor Bruce Willis and former congresswoman Gabrielle Giffords are perhaps the most famous people to have publicly acknowledged their aphasia. (Willis’s diagnosis, it was recently announced, has progressed to frontotemporal dementia.)
---It Took Six Years for Me to Say Two Words (Judith Hannah Weiss, Oldster, 9-18-23) After a major car accident 17 years ago, Judith Hannah Weiss learned that some things can be replaced, but your brain isn’t one of them.
• What Is Aphasia? (National Aphasia Association) "Aphasia is an impairment of language, affecting the production or comprehension of speech and the ability to read or write. Aphasia is always due to injury to the brain-most commonly from a stroke, particularly in older individuals. But brain injuries resulting in aphasia may also arise from head trauma, from brain tumors, or from infections. This helpful articles provides brief information about the different types of aphasia such as Global, Broca’s, Wernicke’s, Primary Progressive, Anomic, and Mixed Non-fluent aphasia.
Some of the components of a complex aphasia syndrome may also occur in isolation. This may be the case for disorders of reading (alexia) or disorders affecting both reading and writing (alexia and agraphia), following a stroke. Severe impairments of calculation often accompany aphasia, yet in some instances patients retain excellent calculation in spite of the loss of language."

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Rare and undiagnosed diseases

and genetic disorders

Organizations, databases, and other resources

• National Organization for Rare Disorders (NORD). See links on NORD's website to various topics, including Rare disease information (alphabetically listed) and Resources and FAQs
• Global Genes: Allies in Rare Disease "Global Genes connects, empowers and inspires the rare disease community." See Rare Facts and Rare Diseases List, A-Z There are more than 7,000 known rare diseases to date. Browse the list below for more information on a specific disease, support organizations, related news, events and clinical trials.
• OrphaNet (the portal for rare diseases and orphan drugs--a European database, in several languages)
• NORD member organizations (alphabetical list, with links)
• Rare Disease Database (National Organization for Rare Disorders) (NORD)
• Health Conditions, Genetics Home Reference (U.S. National Library of Medicine) Explore the signs and symptoms, frequency, genetic cause, and inheritance pattern of various conditions, diseases, and syndromes.
• Office of Orphan Products Development advances the evaluation and development of products (drugs, biologics, devices, or medical foods) that demonstrate promise for the diagnosis and/or treatment of rare diseases or conditions
• The Rare Diseases Clinical Research Network (RDCRN) Contact Registry is a way for patients with rare diseases and their family members to learn about research studies they may be able to join.
• Rare Action Network (RAN), advocacy network working at the state level to improve the lives of the 30 million Americans living with a rare disease
• NIH Office of Rare Diseases Research (ORDR)
• Genetic and Rare Diseases Information Center (GARD) (National Center for Advancing Translational Sciences). See, for example, How to find a disease specialist.
• All Disorders (National Institute of Neurological Disorders and Strokes)
• a href="https://www.brainandlife.org/disorders/" target="_blank">Neurological Disorders, A to Z (Brain & Life)

• The NIH Undiagnosed Diseases Program: Insights into Rare Diseases (William Gahl and colleagues, PMC 2014 Jul 15) This report describes the NIH Undiagnosed Diseases Program (UDP), details the Program's application of genomic technology to establish diagnoses, and details the Program's success rate over its first two years. See The National Institutes of Health Undiagnosed Diseases Program: insights into rare diseases. (Gahl, et al., Genet. Med., PubMed, 2010).
• Undiagnosed Diseases Network (UDN, The Common Fund). In US, call 1-844-RING UDN (746-4836); from other countries, 1-617-432-2344. See Stalking the ‘Unknown Enemy’: Doctors Turn Scope On Rare Diseases (Anna Gorman, Kaiser Health News, 4-20-17)

• Rareshare (social hub building communities for patients, families, and healthcare professionals affected by rare disorders)
• Patient Organizations Database(NORD) Diseases and conditions
• Diseases and conditions (PubMed Health, alphabetical)
• Blood disorders (National Heart, Lung & Blood Institute)
• Infectious Disease Information, A to Z (CDC National Center for Infectious Diseases)
• Disorders, A-Z (National Institute of Neurological Disorders & Stroke, NINDS). Subscribe to particular feeds.
• Index of Rare Diseases (Health on the Net Foundation, formerly Orphanet) a European database, in several languages
• Disease InfoSearch (Genetic Alliance)
• Rare diseases, A to Z directory (Genetic and Rare Disease Information Center, GARD, in the National Center for Advancing Translational Sciences, NIH)
• Rare Diseases with FDA-Approved Medical Products (GARD)
• Medical and Science Glossaries (GARD)
• List of rare diseases (Health on the Net)
• FAQs about Registries (collections of information about individuals, usually focused around a specific diagnosis or condition)
• How to find a disease specialist (National Center for Advancing Translational Sciences)
• Newborn screening. The Test of a Lifetime (Amy Paturel, Neurology Now, Nov. 2013) Screening for rare genetic disorders can change lives. "“Even one extra day without a diagnosis can sometimes mean the difference between a child being able to walk versus one who is in a wheelchair, or one who can breathe on his own versus one who is ventilator–dependent.” ~Priya Kishnani, MD
• Newborn Screening for Rare Diseases GARD
• Tips for Finding Financial Aid (Genetic and Rare Diseases Information Center)
• The Mighty Special pages with stories by and about patients with rare and chronic diseases. "We face disability, disease and mental illness together."
• FAQs About Chromosome Disorders (GARD)
• Rare Disease Day at NIH

• Tips for the Undiagnosed (GARD)
• Genetics Home Reference (NIH, National Library of Medicine)
• How can I find a genetics professional in my area? (NIH, National Library of Medicine)
• The Power of Genes, and the Line Between Biology and Destiny (Terry Gross, Fresh Air, 5-16-16) As researchers work to understand the human genome, many questions remain, including, perhaps, the most fundamental: Just how much of the human experience is determined before we are already born, by our genes, and how much is dependent upon external environmental factors? Oncologist Siddhartha Mukherjee tells Terry Gross the answer to that question is complicated. "Biology is not destiny," Mukherjee explains. "But some aspects of biology — and in fact some aspects of destiny — are commanded very strongly by genes." The degree to which biology governs our lives is the subject of Mukherjee's new book, The Gene: An Intimate History.
• Mercies in Disguise: A Story of Hope, a Family's Genetic Destiny, and the Science That Rescued Them by Gina Kolata (see Times review: Life with a Rare Genetic Disease: The Science, the Suffering and the Hope. "The Baxleys, longstanding pillars of Hartsville, S.C. Bill, the pater familias and a chemical engineer, is increasingly bewildered by simple tasks like opening a package of crackers...Kolata takes a couple of detours into the history of the competitive quest to understand how these adult-onset diseases are caused by infectious proteins that start with a mutated gene and how they leave patients’ brains riddled with microscopic holes. These excursions are a useful reminder of both the ego-driven ambitions that so often propel scientific discovery (in this case, the payoff was two Nobel Prizes) and how remote such discoveries usually are from the development of effective treatments." Also reviewed: The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future by Joselin Linder.
• Crowdsourced Medicine Is Transforming the Diagnosis of Rare Disorders (Christina couch, NBC News, 3-6-17) When a patient has a rare condition or non-specific symptoms, getting an accurate diagnosis can become a costly process that takes months or even years. CrowdMed may show that crowdsourced medical diagnosis could do a better job. It harnesses the combined savvy of more than 20,000 doctors, nurses, medical students, and other sleuths — including some with no formal healthcare credentials — to offer suggestions patients can bring to their in-person doctors that might help expedite the time it takes to find a correct diagnosis. Launched in 2013, the San Francisco-based company has helped more than 2,000 patients get closer to finding the right diagnosis. CrowdMed has both fans and critics. "But it’s not cheap. Patients pay fees of up to $749 per month — higher fees buy higher-ranked detectives working on the case — and the site reserves a monetary reward of $200 to $1,000 that a patient can divide among the most helpful medical detectives on the case."
• Medical, Scientific, Political and Journalistic Pitfalls in the Study of Confusing Illnesses (video of Julie Rehmeyer's talk at Santa Fe Institute on how poorly federal agencies, researchers, doctors, and the media handle confusing illnesses, without clear mechanisms or sharply-defined symptoms, which are often considered psychosomatic. She focuses on CFS but the same pattern operates with AIDS, multiple sclerosis, and chronic Lyme disease.) Listen to the whole thing!
• Narratively's "one in a million" series (A look at what it's like to live with an extremely rare illness, or to love someone who does)
• Medical mysteries, patient stories, and fighting bad medicine (includes stories of patients with undiagnosed and hard-to-diagnose diseases and conditions)
• Expanding the limits of modern medicine (Raymond MacDougall, Division of Intramural Research, NIH). NIH Undiagnosed Diseases Network will address abundance of mystery cases.
• Lincoln’s Shot, (Lane DeGregory, Tampa Bay Times, 2018) Lincoln Hoyle-Germann was born with curly black hair, chubby cheeks, and X-linked myotubular myopathy, or MTM, a rare, genetic muscle disease that mainly affects boys. Because the disorder reduces the body’s ability to make myotubularin, a protein thought to be necessary for muscle development, babies with MTM lack muscle tone and have a “floppy” appearance. Most MTM patients don’t live past early childhood. Lincoln was born unable to breathe or swallow, doomed to die. But across the country, researchers were fixing floppy dogs with the same condition. Could his parents keep him alive long enough for science to come up with a cure? The story behind the story: Lane DeGregory Follows a Family Waiting for a Medical Miracle (Jennifer Lu, The Open Notebook, 5-12-2020) about a three-year science-reporting journey that culminated with DeGregory's eight-part series. Lane DeGregory, a Pulitzer Prize–winning enterprise reporter at the Tampa Bay Times, was writing about a photographer who took portraits of terminally ill children, when she was tipped off to an astonishing story. One of the children’s mothers pulled DeGregory aside and said, “You should do a story about us. We’re waiting for a miracle.” Here, DeGregory tells Jennifer Lu how she distilled three years of reporting into a story that is vast in scope, yet intimate—and how waiting to write and letting scientists give emotional interviews made her story better. “There’s the human story of a little boy who was doomed to die, [but] who might get a second chance at life,” she says. See also Life with children living with myotubular or centronuclear myopathy (Joshua Frase Foundation).
• The Disease Took Zara, Then Sara. Could Ayla Be Saved? (Gina Kolata, NY Times, 11-9-22) Two sisters in one family died from a genetic disorder. Before a third child with the disease was born, doctors hatched a plan to spare her of its effects. For the first time, doctors have successfully treated a fetus by infusing a crucial enzyme into its minuscule umbilical cord, halting an otherwise fatal inherited disorder known as severe infantile Pompe disease. "There are rare genetic conditions known as lysosomal storage diseases, in which a missing enzyme leads to an accumulation of toxic substances in cells. A few of these diseases — including severe infantile Pompe — can be treated by infusing the missing enzyme starting immediately after birth. But as irreversible damage can start before birth, Dr. MacKenzie wondered if she could treat fetuses with these diseases by infusing enzymes through the umbilical cord into their bloodstream."
• Valley woman deals with porphyria, a deadly killer (Sheila Hagar, Union-Bulletin,3-8-17) Porphyria (poor-FEAR-e-uh, a very rare disease. "She and her siblings knew they were at risk. Their mother had some symptoms in her 30s, and testing revealed three of her four children had the genetic markers. That said, those who carry the genes rarely get onset of the disease. Within that subset, it is rarer still to have more than a single attack." The potentially most powerful weapon to battle her deep despair just got yanked away. A liver transplant was scheduled but cancelled because the team didn't know enough about porphyria.
• One of a Kind (Seth Mnookin, New Yorker, 7-21-14) What do you do if your child has a condition that is new to science? when you learn your child could die from a disease with no other known sufferers? Seth Mnookin follows a family battling a rare genetic disease.
• Marc Johnson and Kathleen Gallagher.
• A bad heart and housemaid's knee (Pat McNees's story about Marian P. and a genetic disorder called sitosterolemia, in which the body absorbs abnormal amounts of plant cholesterol (sitosterol) and, unable to excrete it, deposits it in xanthomas and in the arteries, which leads to heart disease. One in a Billion: The Story of Nic Volker and the Dawn of Genomic Medicine by Marc Johnson and Kathleen Gallagher. The story of a young boy with a never-before-seen disease, the first human being whose life was saved by genome sequencing—based on the authors’ Pulitzer Prize–winning reporting. Susan Okie's book review (WaPo 4-24-16) suggests the obstacles faced by both the medical team and the family, not to mention the young boy.
• What's Wrong with Summer Stiers? (Robin Marantz Henig, Medical Detectives, New York Times Magazine, 2-18-09), the story of a patient with more than her share of medical problems--she suffered retinal bleeding, seizures, bone death, and kidney failure--and of efforts by NIH's Undiagnosed Diseases Program to get to the root of the problem). See also Why Did Summer Stiers Die? (Robin Henig, XX Factor, Slate, 7-9-09)
• Living with Rare Diseases (NORD)
• Medscape Reference

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Compassionate use of experimental drugs ("right to try" laws)

The FDA refers to such a program as an expanded access program (EAP). ... “Compassionate use” is a more colloquial term that is not generally used by the FDA. Individuals and their physicians can apply for use of an investigational drug using FDA Form 3926, an application form created by the agency in June 2016.
• Examining Patient Access to Investigational Drugs A hearing was held Tuesday, Oct. 3, 2017, by the Subcommittee on Health of the House of Representatives’ Committee on Energy and Commerce. The subcommittee called on Alison Bateman-House and several other witnesses, including a veteran with ALS, a biotech CEO, a patient advocate, the commissioner of the FDA and the U.S. Government Accountability Office’s director for health care.
• What I Told Congress About Patient Access To Experimental Medicines (Alison Bateman-House, Forbes, 10-17-17) The "de facto purpose of the hearing was to talk about right to try laws. These laws purport to grant terminally ill patients access to experimental medicines outside of clinical trials. In my analysis, what these laws really do is take the current FDA process by which severely ill patients with no other treatment options are able to access these medicines and strip it of vital provisions that benefit patients, adding nothing of value in return....I used my time before legislators to tell them what I and my colleagues in the Working Group on Compassionate Use and Pre-Approval Access (CUPA) have learned after more than three years of intensive study about patient access to experimental medicines. First, there is a widespread lack of knowledge of the FDA’s expanded access program, the existing channel by which seriously ill patients may access experimental medical products outside of clinical trials. Again and again, we found that patients, doctors, reporters and even personnel in the pharmaceutical industry have not known that it is possible to access investigational drugs outside of clinical trials, much less how to do so. They may have heard the term “compassionate use,” but what that is, who it is for, and how to take advantage of it was largely a mystery....On the whole, patient advocacy groups tended to be more familiar with the topic; however, again, there was a vast range in knowledge...
The second issue I raised in my testimony was that of rampant inaccurate, even mythological, beliefs about access to investigational medical products....One such belief is that the FDA can force drug or device companies to make their products available. This is not true. The FDA can merely approve a request to proceed once the relevant company has agreed to it; if the company says no, there is no higher power to which a patient can appeal...Another widespread myth is that the FDA is slow to review and decide upon expanded access requests. This is not true.... (Read on to learn about further myths, and the facts....)..."There is no doubt that some experimental therapies are able to bring patients back from the very edge of death. A well-known example was Gleevec, and a more recent example is immunotherapy. But we’ve seen that immunotherapy can miraculously help a lucky few, yet kill others, and we do not yet know how to predict who will benefit and who will be harmed." "When drugs are tested in clinical trials, meticulous records are kept on patient survival, adverse events, and deaths. But this typically has not been the case in expanded access. Upon receiving experimental drugs to try on their patients, physicians are told to report serious or unexpected reactions and a summary outcome; however, it is widely known that this is not always done. Furthermore, the FDA does not audit these physicians to determine or ensure compliance with this rule. As a result, we do not know how many of those who try experimental products via expanded access are harmed, and, because nobody’s systematically tried to document it, we don’t know how many of those patients are helped or how many experience no effect, either positive or negative."
• Expanded Access: Information for Patients (U.S. Food and Drug Administration, or FDCA)
• Expanded Access Navigator (Reagan-Udall Foundation) Expanded Access (EA) may be considered for patients who have exhausted their treatment options and are not eligible for, or able to participate in, a clinical trial.
• From 100 Hours to 1: FDA Dramatically Simplifies its Compassionate Use Process (Alexander Gaffney, Regulatory Affairs Professionals Society, 2-4-15) Before Feb. 2015, patients and doctors had trouble accessing the Expanded Access program. The new form should take under an hour to fill out.
• Characterizing expanded access and compassionate use programs for experimental drugs (Jennifer E. Miller, Joseph S. Ross, Kenneth I. Moch, and Arthur L. Caplan, BioMed Central Res Notes, 7-28-17) Team sought to determine the characteristics of “expanded access” and “compassionate use” programs registered in ClinicalTrials.gov and to determine the percentage of drugs provided through these programs that ultimately received FDA marketing approval. "Most (76%) provided drugs in expanded access programs eventually received FDA approval. Thus, provided drugs in registered expanded access programs are, more times than not, eventually deemed safe by the FDA. Notwithstanding, the fact that nearly 25% of expanded access drugs have yet to receive FDA approval, shows that we cannot entirely eliminate safety and efficacy questions in expanded access and compassionate use programs. It is reasonable to allow the FDA to retain its oversight and approval role for these programs, in order to help mitigate safety risks for patients- especially since it approves 99% of expanded access and compassionate use requests....Expanded access programs raise broader ethical and regulatory questions, including whether (and how much) product manufactures should re-direct investigational products and resources from formal clinical trials to patients requesting expanded access and how to finance these programs."
• The dark side of ‘compassionate use’ of experimental drugs (Ariana Eunjung Cha, Washington Post, 8-31-16) "A powerful report from STAT this week provides a heartbreaking reminder that the reason experimental drugs are not available for anyone to use is because they are just that — experimental. And the chances that things will go wrong are as strong as that they will go right. The report focuses on a highly controversial treatment for rare cancers being promoted by Texas doctor Stanislaw Burzynski and how, from 2011 to 2016, 37 members of Congress wrote to the Food and Drug Administration about his work. Many of those letters asked the agency to give their constituents “compassionate use exemptions” to try his unapproved drugs. But what about the other letters? They were reports about patients having bad reactions — or even dying — from his treatments...These cases should serve as cautionary tales to parents to have realistic expectations about compassionate use and to beware of supposed miracle cures."
• To help cancer patients, lawmakers pushed access to a controversial doctor (Sheila Kaplan, STAT, 8-29-16) "The treatment, developed by a controversial Texas doctor named Stanislaw Burzynski to treat a rare form of cancer, has never been shown to be successful. Yet, for years, patients have continued to seek Burzynski out, and to ask their representatives in Congress to intervene on their behalf. From 2011 to 2016, 37 members of Congress wrote to the FDA about Burzynski, several of them numerous times, according to documents obtained by STAT under the Freedom of Information Act. Most of the lawmakers asked the agency to grants constituents “compassionate use exemptions” so that they could try his unapproved drugs, or to allow his clinical trials to proceed. Other letters, however, reflect the long-standing allegations against Burzynski, who has been cited by the FDA in dozens of cases in which patients have reported bad reactions to his treatment — a mix of peptides — or even died. In those letters, the lawmakers ask the agency to shut down the doctor’s clinical trials. Lawmakers routinely appeal to government agencies on behalf of constituents in need of medical assistance. But in Burzynski’s case, the doctor’s critics say, the congressional advocacy risks giving the terminally ill and their families a false sense of hope, while also conferring a measure of legitimacy on him that many believe he does not deserve."
• I've heard that compassionate use is a way to get access to experimental treatments. How does it work? (Timothy J. Moynihan, M.D, answers question on Mayo Clinic website)
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Finding practical medical information online for people with rare conditions

• Accord Alliance. Promotes comprehensive and integrated approaches to care that enhance the health and well-being of people and families affected by disorders of sex development (DSD, which includes some conditions referred to as "intersex").
• American Association of People with Disabilities (AAPD), a convener, connector, and catalyst for change, increasing the political and economic power of people with disabilities,
• Ana's Story (Thomas Curwen's two-part series about how facial reconstruction may change the life of Ana Rodarte, whose life has been defined by facial disfigurement caused by neurofibromatosis, LA Times, 4-4-09)
• Androgen Insensitivity Syndrome Support Group (AISSG) (UK). Information and support for XY women, including links to related sites.
• Bandaides and Blackboards (a site by kids and teens about growing up with illness)
• Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend by Lisa J. Copen. Instead of saying "Call me if you need anything," do something. Here are some tips on how to help out.
• The Beneficial Effects of Life Story and Legacy Activities (Pat McNees's story for Geriatric Care Management Journal)
• Center for Medical Consumers (working to protect patients' rights--helping them make informed decisions)."Are all those drugs and tests you're told you need really critical to your health? The only way to answer this question is to read the published studies yourself. We do it for you each month. Our articles provide a critical evaluation of the latest medical research you’re not likely to get from your doctor.
• Chemical Injury Information Network (CIIN)
• Chronic Babe (a blog about living with chronic illness)
• Cochran Collaborative (an international network providing impartial and independent summaries of medical research findings,, to help inform health care providers' decisions about whether a particular treatment will work better than another and do more good than harm--in other words, providing "evidence-based" recommendations. ).
• Cochrane (Cochrane contributors - 37,000 from more than 130 countries - work together to produce credible, accessible health information that is free from commercial sponsorship and other conflicts of interest. "Trusted evidence. Informed decisions. Better health."
• Cochran Complementary Medicine ( Cochrane reviews related to complementary, alternative and integrative medicine)See top 50 reviews.
• Complementary and Alternative Medicine Guide (University of Maryland Medical Center)
• Coping With Crises Close to Someone Else's Heart (Harriet Brown, NYTimes 8-16-10), essay on why some people distance themselves from those suffering a crisis or offer "pseudo-care" instead of real help)
• Creature Comforts (Rebecca Skloot, NY Times Magazine, 12-31-08) What exactly defines a "service animal"?
• Dirline Directory of Health Organizations (National Library of Medicine). You have to register to use it.
• Disability blogroll (scroll down, on left), Disability Studies, Temple University
• DOCS: Doctors Offering Charitable Services (changing lives through surgical charity)
• Doctors Say I'm Unhealthy; I Disagree (Kim Lute, Newsweek, 11-21-08)
• Doomed by delay (Patricia Callahan, Chicago Tribune, 10-8-17) How Illinois bureaucracy robbed parents of a chance to save their children from a deadly disease. Because of Illinois’ delay in screening newborns for Krabbe disease, Lana Shelton was not tested for it when she was born in July 2016. NASW: "A compulsively readable piece about an arcane disease that shows the emotional toll of ongoing bureaucratic ineptitude." (Listen to podcast: audio testimonies from the parents of babies with Krabbe.
• Drug Interaction Tool (University of Maryland Medical Center)
• Multi-Drug Interaction Checker (Medscape)
• Emerging Diseases. Patients at the crossroads of new diseases and chronic ills. (Pamela Weintraub's blog) Much on Lyme disease, but also others.
• Environmental Illness Resource (EiR), an information resource and interactive community site for survivors of environmental and invisible illnesses.
• Environmental Working Group's Guide to Sunscreens
• Everyone Communicates (augmentative and alternative communication, for when a person loses the ability to speak). Links to useful resources.
• Evidence-based medicine (Writers and Editors site)
• Faith complicates a young mother's life-or-death decision on lung transplant (Brigid Schulte, Washington Post, 2-17-10) Difficult decision by a Jehovah's Witness.
• Fanconia Anemia: A Handbook for Families and Their Physicians (PDF, free online, by Lynn and Dave Frohnmayer)
• Feverish Times (Lisa Sanders, New York Times Magazine, 2-19-09) on diagnosing a difficult-to-diagnose blood disorder in a lymphoma patient (hemophagocytic syndrome, or HLH)
• Family Health History (Genetic Alliance)
• 15 steps you can take to reduce hospital infection (Committee to Reduce Infection Deaths, or RID)
• GARD, Genetic and Rare Diseases Information Center
• Genetic Alliance, a nonprofit health advocacy organization devoted to promoting optimum health care for people suffering from genetic disorders, whose network of groups includes more than 1,000 disease-specific advocacy organizations (including some focused on intersexed conditions) as well as universities, private companies, federal agencies, policy groups, and private citizens working to promote genetic research.
• HealingWell.com (community forums and resources on diseases, disorders, and chronic illness)
**HealthCentral has sites (and blogs) in these categories: Acid Reflux, ADHD, Allergy, Alzheimer's, Anxiety, Arthritis, Asthma, Bipolar, Blood Pressure,Breast Cancer,Cholesterol, Chronic Pain, Cold and Flu, COPD, Depression, Diabetes, Diabetes and Teens, Diet and Exercise, Erectile Dysfunction, Food and Nutrition, Heart Disease, Herpes, HIV/AIDS, IBD, Incontinence, Learning Disabilities, Menopause, Migraine, Multiple Sclerosis, Obesity, Osteoporosis, Prostate, Rheumatoid Arthritis, Schizophrenia, Sexual Health, Skin Cancer, Skin Care, Sleep, Wellsphere. This looks like a good place to start finding out about a health problem. Check out HealthCentral's Video Library. The videos I sampled (from a large, searchable, well-organized collection), looked very helpful, especially for those new to a condition. The videos come from various sources.
• How to Find the Best Medical Information Online (Jim T. Miller, Huff Post, 10-4-13)
• In the Kingdom of the Sick: A Social History of Chronic Illness in America by Laurie Edwards, author of Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties. Read and/or listen to her appearance on Fresh Air (NPR, 4-9-13) "Laurie Edwards has a chronic respiratory disease so rare that she's met only one other person who has it — and that was through the Internet. In and out of hospitals her entire life, Edwards, now 32, wasn't accurately diagnosed until she was 23. Before they correctly identified her condition — primary ciliary dyskinesia (PCD), which is similar in some ways to cystic fibrosis — doctors thought she might be an atypical asthma patient, that she wasn't taking her medications correctly, or that her symptoms were perhaps brought on by stress."
• Johns Hopkins Health Library
• L'Arche ("relationship, transformation")--L’Arche faith-based communities are family-like homes where people with and without disabilities share their lives together.
• National Institute on Aging's A-Z Health Topics
• National Institutes of Health (NIH). Contact info for the various institutes and centers.
• NIH Clinical Trials and You
• National Organization for Rare Disorders (NORD). Particularly useful: Rare disease information (alphabetical list, click on link to get info for a particular disease)
• Neurological Disorders, A to Z (Brain & Life)
• NREPP (SAMHSA's National Registry of Evidence-based Programs and Practices--Substance Abuse and Mental Health Services Administration)

Arthritis

The National Arthritis Foundation defines arthritis as “a complex family of musculoskeletal disorders consisting of more than 100 different diseases or conditions that destroy joints, bones, muscles, cartilage and other connective tissues, hampering or halting physical movement.”

According to the Association of Health Care Journalists, "Osteoarthritis is the most common, affecting about 34 percent of adults over age 65. It is characterized by joint stiffness and transient to severe joint pain. It is prevalent in weight-bearing joints such as knees and hips and can affect the hands, back and neck, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases."
"Rheumatoid Arthritis (RA) is an auto-immune disease which causes the body to attack its own tissues, especially the synovium, a thin membrane which lines the joints. The attacks result in painful fluid build up in the joints and inflammation throughout the body. It commonly affects the hand, but can also strike other joints." Scroll down for links to many articles about rheumatoid arthritis.

• Arthritis Foundation (800-568-4045)
• National Institute of Arthritis and Musculoskeletal and Skin Disease (NIAMS)
• Patient Guidelines (Creaky Joints) For information only (not medical advice), guidelines on gout, biosimilars, rheumatoid arthritis testing and monitoring, family planning, and "Caring for Children with Juvenile Idiopathic Arthritis (JIA): A Parent’s Guide", or for migraine caregivers, migraine patients, rheumatoid arthritis patients, ankylosing spondylitis patients, psoriatic arthritis patients, osteoarthritis patients.

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• Don’t Take Osteoarthritis Lying Down (Jane E. Brody, NY Times, 9-19-16) What "you eat and don’t eat, as well as whether and how you exercise, can affect your risk of developing arthritis and your ability to cope well despite its effects on your joints. Recent evidence indicates that osteoarthritis is not simply the result of years of wear and tear on the cartilage in important joints like knees and hips. Rather, it may be promoted, and perhaps initially caused, by chronic low-grade inflammation that is now also linked to other major chronic ills, including heart disease and Alzheimer’s disease, in which diet and exercise may play a protective role. One of the biggest mistakes people make when arthritis develops is to limit movement of the affected joint, which leads to stiffness and weakness that only makes matters worse....

Much is known about the factors that increase the likelihood of developing arthritis, several of which are related to the way people live their lives. The most important of these – being overweight or obese – bodes ill for the future of millions of American adults, half of whom now weigh a lot more than they should." This is a must-read article! Covers important steps you can take to prevent or alleviate arthritis and arthritic pain." Rubber gloves and mesh rubber mats are particularly helpful if you have trouble opening jars, writes Brody.
• Jonathan's Story (National Health Service) Jonathan Gledhill was diagnosed with rheumatoid arthritis in 2006, aged 27. He explains how arthritis affects his life. 'If I get enough sleep and don't overdo things, it's manageable'
• Arthritis Supplies (online catalog of aids for daily living)
• Living Better with Arthritis (catalog of aids for arthritis--for comfort & therapy; communication; dressing/grooming; foot care; house, car and garden; kitchen; resting and relaxation; bath.

• Living Better with Arthritis (catalog of aids for arthritis--for comfort & therapy; communication; dressing/grooming; foot care; house, car and garden; kitchen; resting and relaxation; bath.
• Yoga for Arthritis (Dr. Steffany Moonaz). You can download two articles there: Yoga for People with Arthritis (by Steffany Moonaz) and Yoga for Arthuritis: A Scoping Review
• The Ultimate Arthritis Diet (Arthritis Foundation) Learn which foods from the Mediterranean diet can help fight inflammation caused by arthritis. Follow the Mediterranean diet, rich in whole foods, including fruits, vegetables, fish, nuts and beans, but low in processed foods and saturated fat,
• The “Other” Symptoms of Axial Spondyloarthritis (AxSpA) (Creaky Joints)
• The best products for arthritic hands (Christie Dietz, National Geographic, 4-29-24) Best compression gloves, exercise putty for arthritic hands, automatic can opener, door knob grips, ergonomic mouse, dressing aid, grabber reacher tool, vegetable chopper, key turner, foam tubing grips.
• 9 Best Compression Gloves for Arthritis and Carpal Tunnel: Benefits, Features, and More (Healthline) Compression gloves may support circulation and manage tingling and pain in your hands. They work by lightly squeezing the veins in your hands to support healthy circulation, while also preventing inflammation that can cause joint pain. A fair amount of explanation.
• DMARDS Drug Guide
• Ring Splints. Seated at lunch near a woman I just met, I admired her beautiful rings, which covered most of two fingers. She explained that they had a function--keeping her fingers from hyperextending, because she has rheumatoid arthritis. More images of ring splints here and here. Type "ringsplint" into a search engine and find more lovely designs, including some in plastic.

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• Autoimmune diseases fact sheet
• How Arthritis Hurts (Arthritis Foundation) Different types of arthritis can cause different kinds of pain and call for different forms of treatment.

• Local weather tool from Arthritis Foundation. Plug in your local zip code and predict your pain level for the day.
• Seated exercises for relief of arthritis and joint pain (YouTube video, Grow Young Fitness)
• Fight Arthritis Pain Without Pills (Dorothy Foltz-Gray, Arthritis Foundation)

• Autoimmune Disease and Rheumatoid Arthritis (Web MD)
• What is arthritis? (Home Instead Senior Care and the Arthritis Foundation). Part 1 of 7-part arthritis education series, which also covers symptoms and warning signs, diagnosis and care, common treatments, prevention and living with arthritis, coping and support for sufferers and caregivers, help and research.

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• Psoriatic arthritis (PsA), a form of inflammatory arthritis, which develops in about 30 percent of people with psoriasis, "is an autoimmune disease, meaning it occurs when the body’s immune system mistakenly attacks healthy tissue, in this case the joints and skin. The faulty immune response causes inflammation that triggers joint pain, stiffness and swelling. The inflammation can affect the entire body and may lead to permanent joint and tissue damage if it is not treated early and aggressively." (Arthritis Foundation). This piece describes briefly five types of psoriatic arthritis: symmetric and asymmetric psoriatic arthritis, digital psoriatic arthritis, spondylitis, and arthritis mutilans.
• Septic Arthritis (Johns Hopkins Medicine)
• All Arthritis Types (Creaky Joints)
• Is Arthritis Avoidable? (Jyoti Madhusoodanan, Ask Well, NY Times, 4-18-23) Arthritis is a catchall term for the more than 100 kinds of inflammatory joint conditions, each of which can arise for different reasons. Scientists don’t know precisely why some people are more prone to joint inflammation and pain with age than others. But about 12 percent of osteoarthritis cases are a result of joint injuries, such as meniscus or ligament tears, from when they were young. For most people, preventing arthritis later in life should begin many years before it is a concern — by taking steps to prevent joint injuries during sports or exercise, and recovering properly when they occur. For those who are not at risk of developing sports-related injuries, staying physically active and maintaining a healthy weight can help to prevent excessive wear and tear of your joints and to reduce pain if arthritis sets in later in life. Joint pain, stiffness and swelling aren’t always inevitable results of aging, experts say.

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• Life with Rheumatoid Arthritis: What Will My Quality of Life Be Like? (Rheumatoid Arthritis Support Network) People with rheumatoid arthritis (RA) live with constant pain that limits their daily activities. To manage the symptoms of RA, there are numerous DIY natural remedies, as well as prescription medications that reduce pain and reduce inflammation. There are also lifestyle changes that a person with RA can make to increase their chance of maintaining a good quality of life. See also, among other articles, Does CBD Oil Really Help Treat Arthritis Pain?
• 8 Ways You Can Travel Like an Expert With Arthritis (Cleveland Clinic)
• What can I do about my rheumatoid arthritis? (Patient Power) Read helpful transcripts.
• If You Tear a Knee Ligament, Arthritis Is Likely to Follow in 10 Years (Gina Kolata, NY Times, 11-6-17) “It’s like a dirty little secret,” said Kocher, who is also the associate director of the division of sports medicine at Boston Children’s Hospital. “It’s not that anyone is covering up. It’s just that it’s not well known.” But as someone who spends his days repairing torn knee ligaments in teenagers, he is worried. He has written a paper, soon to be published, that says the number of A.C.L. operations at 26 children’s hospitals in the United States has soared as more children and adolescents play sports that involve twisting the knee, like soccer and basketball, and often participate year-round....“If a 15-year-old gets arthritis in 10 years, knee replacement is not a great option at age 25"...."A person can have only two or three knee replacements in a lifetime."
• Knee and hip replacement and other fixes for body parts (on another page on this website)
• Life Before Rheumatoid Arthritis: Make it a Wake Not a Funeral ( J.G. Chayko, Living With Arthritis, Creaky Joints, 2-26-24 "It can certainly feel like a funeral of life as we know it after a life-changing diagnosis of rheumatoid arthritis...but what if we don’t grieve it as much as celebrate it?"
• Autoimmune Arthritis (primary joint diseases with an autoimmune component, information from the International Autoimmune Arthritis Movement, or IAAM)

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• Answers About Rheumatoid Arthritis, Part 1 by Dr. Vivian P. Bykerk. Rheumatoid arthritis is a disease that often starts in middle age and is more common in women. Part 2 is here and Part 3 is here .
• Timing Is Everything for RA and Lupus Patients Needing Joint Replacement (John Gever, Medpage Today, 6-21-22) New advice on which antirheumatic meds to continue and which to stop before surgery
• I Have Rheumatoid Arthritis (personal stories, advice, and support from members)
• Rheumatoid Arthritis Warrior (an informative blog--see, for example, What Is it Like to Live with Rheumatoid Arthritis? Part 3 and Methotrexate and Rheumatoid Arthritis.
• RA Beginnings: Before the Painful Joints (Nancy Walsh, Medical Journeys, MedPage Today, 3-18-22. Part 1 of a series.) At play in rheumatoid arthritis are autoantibodies, genetic factors, and environmental exposures.
---RA: Still a Clinical Diagnosis (Nancy Walsh, MedPage Today, Part 2 of a series, 3-18-22) The pattern of joint involvement in rheumatoid arthritis is key. "It's all about patterns," he said. "The classic presentation is the patient who comes in with inflammation, redness, swelling, stiffness, in the wrists, knuckles, ankles and feet, maybe the knees and elbows, and they have fatigue and functional limitations."
"The initial presentation might be just an inflamed knee, but within a few months the patient is going to evolve into the definitive pattern for RA, which is symmetrical joint inflammation of the small joints of the hands and feet, he noted. "But there are many other types of arthritis that could present with one or multiple joint symptoms and that makes it more complicated."

"One type of arthritis that should be ruled out is osteoarthritis, which is more of a wear-and-tear condition that can sometimes cause swelling and pain, usually in one knee, or the back, or the hip, or the basal joint of the thumb. The presentation is not symmetrical, systemic symptoms such as fatigue are not typically present, and the small joints of the hands and feet are never involved, except for the tips of the finger joints. In RA, the tips of the fingers are not typically affected; rather, metacarpophalangeal and proximal interphalangeal joints and wrists are involved."
"Gout and pseudogout also can be differentiated from RA by the location of the symptoms. Gout, characterized by the deposition of uric acid crystals, usually involves the first joint of the big toe, while pseudogout, with deposition of calcium pyrophosphate crystals, usually presents in the knee, where calcifications can be seen on x-rays."[Do read the article.]
---RA: Choosing Initial Treatment (Nancy Walsh, MedPage Today) In 2021 the American College of Rheumatology (ACR) published a new guideline for the treatment of rheumatoid arthritis (RA), emphasizing the central role of methotrexate in disease management. The specific recommendations stated that methotrexate was strongly recommended over hydroxychloroquine and sulfasalazine as initial treatment for patients with moderate-to-high levels of disease activity who have not previously been treated with disease-modifying antirheumatic drugs (DMARDs); methotrexate monotherapy was also strongly recommended over biologic or targeted synthetic agents for DMARD-naive patients starting treatment....
"When I talk to rheumatologists, I really encourage them to address issues of methotrexate with patients upfront before they go to Dr. Google. I tell them that, in high doses, this is an anticancer drug but the doses we use in RA are significantly lower so we don't see the side effects patients are concerned about with cancer chemotherapy," Weinblatt said.
---Case Study: Treatment-Resistant RA With Surprising Progression (Kate Kneisel, MedPage Today, Part 4 of a series) MRI and therapeutic advances offered older man relief after more than a decade of pain. In this "rare clinical presentation of a giant geode in the humeral head ... MRI proved to be a valuable imaging method for identifying damage in both bone and soft tissue, supporting clinical data when other hypotheses may be implicated," the case authors concluded.

• OT (a poem by retired physician Maggie Westland who has found more pain relief and improvement of function from occupational therapy for chronic advanced osteoarthritis than from other types of treatment)
• Out of Joint: A Private and Public Story of Arthritis by Mary Felstiner (life with rheumatoid arthritis as experienced and studied by a feminist and historian).
• Another Alice by Alice Peterson. Peterson got rheumatoid arthritis at 18, at the start of a promising tennis career
• Blue Remembered Hills: A Recollection by Rosemary Sutcliff (the memoir of one of Britain’s best-loved historical novelists, crippled and badly disabled from the age of three by Still’s Disease, a form of juvenile arthritis)

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Autoimmune diseases

These include Addison disease, certain forms of arthritis, chronic fatigue syndrome, dermatomyositis, fibromyalgia, Graves' disease, Hashimoto's disease, inflammatory bowel disease, lupus, MS, myasthenia gravis, Sjogren syndrome, systemic lupus erythematosus.
• Women'sHealth.Gov fact sheets on autoimmune diseases Fact sheets on Graves disease, Hashimoto's disease, lupus, and thyroid disease
• Meet The Female Founder Who Just Raised $7.2 Million For Her Virtual Care Platform Aiming To Reverse The Autoimmune Epidemic (Marija Butkovic, Forbes, 11-9-22) Ellen Rudolph hit rock bottom with unexplainable, debilitating symptoms ranging from brain fog to gastrointestinal symptoms to fatigue, and was completely bedridden at 25 years old. Doctor after doctor dismissed her symptoms, told her her labs looked normal,said there was nothing they could do for her, and dismissed her as part of the "worried well." She had never experienced anything in her life like the “bone-deep fatigue” she felt, with rashes, bloating, and tremors being physical manifestations that her body was battling something real.

       After years ping-ponging from specialist to specialist, Rudolph received a lab result indicating she had a positive ANA, an anti-nuclear antibody, one of the leading indicators of autoimmune disease. This led Rudolph to start WellTheory, a company on a mission to support those living with autoimmunity and, in turn, reverse the autoimmune epidemic. “We’re doing it through a personalized, evidence-based approach to care. We’re identifying the root cause of autoimmune disorders – rather than prescribing band-aid fixes that mask symptoms – and treating the whole person, and doing this by combining food as medicine, community care, expert-led holistic health programs, and personalized health data insights. Our goal is to support anyone and everyone no matter where they are in their autoimmune journey.”
• ANA test (Mayo Clinic) An ANA test detects antinuclear antibodies (ANA) in your blood. Your immune system normally makes antibodies to help you fight infection. In contrast, antinuclear antibodies often attack your body's own tissues — specifically targeting each cell's nucleus.
      In most cases, a positive ANA test indicates that your immune system has launched a misdirected attack on your own tissue — in other words, an autoimmune reaction. But some people have positive ANA tests even when they're healthy.
     Your doctor is likely to order an ANA test for a suspected autoimmune disease such as lupus, rheumatoid arthritis or scleroderma.
• List of Autoimmune and Autoimmune-Related Diseases (American Autoimmune Related Diseases Association)
• Immunocompromised Times (Susanna Speier's blog) An immunocompromised journalist shares ways to make the spaces we share safer and more accessible to everyone. Start with Vaccinated, boosted and ready to write
• Chronic fatigue syndrome
• Fibromyalgia (FMS)
• What’s Wrong with Me? (Meghan O’Rourke, Personal History, New Yorker, 8-26-13)"I had an autoimmune disease. What I had wasn’t just an illness now; it was an identity, a membership in a peculiarly demanding sect....If this were a different kind of disease, its story might follow a neat arc, from diagnosis to recovery. But the nature of autoimmune disease is to attack in cycles, to 'flare.'...Even after diagnosis, you’re often trapped in an epistemological maze, not least because autoimmune diseases tend to overlap." Today, researchers believe that they have discovered some eighty to a hundred autoimmune disorders, including disorders as various as lupus, multiple sclerosis, type 1 diabetes, and rheumatoid arthritis.
• Researchers Piecing Together Autoimmune Disease Puzzle (Natalie Angier, NY Times, 6-19-01) Researchers have seen that a generalized predisposition toward autoimmunity may run in families, with one person suffering from, say, lupus, another from rheumatoid arthritis, a third from Graves' disease.
• An Epidemic of Absence: A New Way of Understanding Allergies and Autoimmune Diseases by Moises Velasquez-Manoff.
• The Boy With a Thorn in His Joints (Susannah Meadows, NY Times Magazine, 2-1-13). On leaky gut syndrome, food (and medical) allergies linked to the sustained inflammation that characterizes autoimmune arthritis, and ways of changing the gut bacterial population (including probiotics, fish oil, and fecal transplant).
• What Are Autoimmune Disorders? (WebMD describes various autoimmune disease)
• Autoimmune disorders (Medline Plus)
• Autoimmune diseases fact sheet (WomensHealth.gov). Click on fact sheets for chronic fatigue syndrome, fibromyalgia, Graves' disease, Hashimoto's disease, inflammatory bowel disease, lupus, myasthenia gravis, stress and your health, and thyroid disease.
• Autoimmune Disease (six-part overview)
• Childhood Disrupted: How Your Biography Becomes Your Biology, and How You Can Heal by Donna Jackson Nakazawa. How childhood trauma, adversity, and stress affect our physical and emotional health as adults--and are linked to adult illnesses such as heart disease, autoimmune disease, and cancer--and how to heal). "Scientists now know on a bio-chemical level exactly how parents’ chronic fights, divorce, death in the family, being bullied or hazed, and growing up with a hypercritical, alcoholic, or mentally ill parent can leave permanent, physical “fingerprints” on our brains."
• CPT Theatre (the audio storytelling arm of Critical Point Theatre). I particularly recommend

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• Why Can’t I Feel My Legs? (CPT Theatre, the audio storytelling arm of Critical Point Theatre. Start at minute 22) Alex Garretson tells his story of waking up with no feeling in his legs, then experiencing increasing paralysis, slurred speech, loss of finger dexterity, then watching as the medical team tries to figure out why, and how he dealt with the crisis -- a rare and puzzling instance of an autoimmune disease. (First they ruled out brain cancer. "That's when I called my Mom. She was the one losing the most sleep over it.") The diagnosis: Acute disseminated encephalomyelitis (ADEM), which is characterized by a brief but widespread attack of inflammation in the brain and spinal cord that damages myelin – the protective covering of nerve fibers. ADEM often follows viral or bacterial infections, or less often, vaccination for measles, mumps, or rubella.
• The Future of Probiotics (Robynne Chutkan, The Atlantic, 12-12-13) Hippocrates said that all disease begins in the gut. A gastroenterologist's predictions on how new treatments will begin there, too. "Italian researchers found that breast-fed children in Florence and Burkina Faso had similar microbes in infancy, but once they started eating the local fare their gut bacteria diverged dramatically. Florentine children consuming a typical Western diet high in sugar, fat, and meat had less bacterial diversity and more species associated with allergy, inflammation, and obesity. The children in Burkina Faso eating an unprocessed, high-fiber plant-based diet had more diverse species and more types associated with leanness. They also had larger numbers of bacteria that produce beneficial compounds called short-chain fatty acids, which may be important in suppressing disease."
• Leaky Gut: The missing piece in many Autoimmune Diseases, like Hashimoto’s Thyroiditis (Jill Carnahan, MD, on Hypothyroid Mom blog, 4-23-15) Hyperpermeability or “leaky gut” syndrome is the name given to a very common disorder in which the cells lining the intestines become “leaky” due to inflammation. The abnormally large spaces present between the cells of the gut wall allow the entry of toxic material into the bloodstream that would normally be eliminated.
• Guide to Choosing Footwear for People with Arthritis (Lemon Hero Health) Using a paper tracing of your foot while shopping is the ideal way of finding the right shoes for you. And other tips.
• Wish by Spirit:A Journey of Recovery & Healing From an Autoimmune Blood Disease by John W. Young. Joan shares what she has learned about living with immune thrombocytopenia (ITC, a low blood platelet disease), including becoming your own medical advocate.

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• Parents Helping Parents. Building bright futures for children with special needs.
• PandoraOrg.net (research and advocacy for neuroendocrineimmune disorders: myalgic encephalomyelitis, fibromyalgia, and Lyme disease)
• Overcoming Self Defeating Behaviors When You are Chronically Ill (archived talk, Invisible Illness Week, Blog Talk Radio)
• Patient Voices, a NY Times series of first-person accounts (in audio) of living with various chronic diseases, including A.D.H.D., AIDS and H.I.V., A.L.S. (Lou Gehrig's disease), bipolar disorder, Eating Disorders, Epilepsy. Check out the whole list.

• Be a Prepared Patient (Center for Advancing Health) How to find and make the best use of good health care.
• Pulse: voices from the heart of medicine (personal accounts of illness and healing, fostering the humanistic practice of medicine, encouraging health care advocacy). See Pulse's archive of poems and stories.
• Rare Genomics/RareShare Podcast Series Ask the Expert and Patient Navigation.
• The Simple Idea That Is Transforming Health Care (Laura Landro, WSJ, 4-16-12). A focus on quality of life helps medical providers see the big picture—and makes for healthier, happier patients. Focusing on well-being might seem like a basic idea, but it is a departure from the traditional approach, especially with chronic-disease sufferers.
• United Ostomy Associations of America (UOAA, an association of support groups for people who have, or will have, an intestinal or urinary diversion)
• Volunteer Match (we bring people and good causes together)
• When Doctor Visits Lead to Legal Help (Erik Eckholm, NY Times, 3-23-10) Medical care alone is not enough to address the health woes of the poor, which are often related to diet, living conditions and stress. Doctors at Children’s Hospital, "using a protocol that started 18 months ago, referred 500 patients for legal aid last year. Some needed help getting food stamps, heating aid or cash welfare that had been wrongfully denied; some received help with evictions or home repairs; others got legally mandated help for children with learning disabilities."

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Support groups and sites for patients with chronic, rare, and invisible diseases

• Support Groups: The Changes and Challenges They Will Bring to Your Life (Christina J. Werdebaugh, the Director and Support Group Leader of the West Virginia IC Resource Center, on BlogTalkRadio)
• Support Groups (Healthfinder.gov's links to specific support groups)
• Patient Support Groups (World Health Organization's links)
• Support for patients and families (Genetic and Rare Diseases Information Center, 1-888-205-2311
• Support groups: Make connections, get help (Mayo Clinic, general advice)
• Inspire's excellent links to support groups. This Inspire list of "health and wellness" support groups provides links related to Addiction (12 groups), Alternative and complementary medicine (6), Asthma and allergies (22), Autoimmune diseases (54), Blood and lymphatic disorders (42), Bones, joints and muscles (62), Brain and nervous system (75), Cancer (60), Caregivers (16), Children's health (60), Clinical trials (1), Diabetes and hormones (36), Diet and nutrition (17, Digestive system disorders (46), Ear, nose and throat (24), Eyes and vision (32), Fitness and exercise (8) Gay and lesbian health (1), Genetic disorders (95), Health insurance (1), Heart and circulation (45), HIV and AIDS (2), Hospice, end-of-life care and bereavement (3), Infant health (43), Infectious diseases (41), Inspiration (3), Kidneys and urinary system (47), Lungs and respiration (41), Men's health (33), Mental health (23), Mind and body wellness (4), Oral health (19), Pain (7), Parenting (8), Plastic and reconstructive surgery (3), Pregnancy and childbirth (37), Rare diseases (44), Senior health (48), Sexual health (26), Skin conditions (33), Sleep disorders (9), Teen health (21), Undiagnosed medical problems (2), Women's health (56). This is by no means a complete list, but it is a start! If you don't find what you need, try googling all the terms related to what you want a group for, plus "support group."
• Healing Well Forum An active, mobile friendly, and anonymous forum on which to share your symptoms, find treatments, and sign up for their "100% free chronic illness community."
• Giving More Support to Support-Group Leaders (Laura Landro, WSJ, 4-16-12).
• Sample Guidelines, American Self-Help Group Clearinghouse
• Self-Help Group Sourcebook Online (American Self-Help Group Clearinghouse)
• Mental Health & Psychology Resources Online (Psych Central)
• RareShare, a unique social hub building communities for patients, families, and healthcare professionals affected by rare disorders. A website for men and women who need to find somebody somewhere in the world who knows what they are going through. Associated with the Rare Genomics Institute. See rare diseases list.

Bone and joint conditions, as listed by Creaky Joints (Global Healthy Living Foundation):

Axial spondyloarthritis (AxSpA)
Fibromyalgia
Gout
Juvenile idiopathic arthritis (JIA)
Lupus
Osteoarthritis
Osteoporosis
Polymyalgia rheumatica
Psoriatic arthritis
Rheumatoid arthritis (RA)

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Acne

• Understanding Acne Treatment (WebMD, 9-10-20) The best treatments inhibit sebum production, limit bacterial growth, encourage shedding of skin cells to unclog pores, or a newer treatment that blocks male hormones in the skin. Because many therapies can have side effects, any patient with acne should proceed with caution when trying a new treatment. People with any type of acne that lowers their self-esteem or makes them unhappy, those with acne that is leaving scars or people with severe, persistent cases of acne, need the care of a dermatologist.
• Acne (Medline Plus, NIH) Also called: Pimples, Zits. Links to basic and specialized explanations.
• Safe Soaps and Cleansers for Acne (WebMD, 1-23-20) "Exfoliating regularly will remove dead skin cells and help keep your pores open. This allows your skin's natural oil to drain before it can clog your follicles and lead to more breakouts."
• How to Get Rid of Inflamed Acne (HealthLine, 3-8-19)
• Acne scars: What's the best treatment? (Mayo Clinic)
• Dr. Gary Peck Oral History (a very long read). Dr. Peck developed Accutane, a common medication for those with acne, at NIH. In his early years at the National Cancer Institute, he was fascinated by how retinoic acid led to the transformation of chick embryo epidermal (skin) cells. Peck discovered how one type of retinoic acid helped humans with severe acne. He also investigated how the compound could benefit those with skin ailments such as Netherton’s Syndrome, Darier’s Disease, and Epidermolytic Hyperkeratosis. Lots of explanations that most articles about acne don't cover.

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Allergies

See also Autoimmune diseases
• That’s A Lot Of Scratch: The $48,329 Allergy Test (Barbara Feder Ostrov, Kaiser Health News, 10-29-18) Janet Winston had a rash that wouldn’t go away. The English professor from Eureka, Calif., always had been sensitive to ingredients in skin creams and cosmetics. This time, however, the antifungal cream she was prescribed to treat her persistent rash seemed to make things worse. Was she allergic to that, too? ... Her Stanford-affiliated doctor had warned her that the extensive allergy skin-patch testing she needed might be expensive, Winston said, but she wasn’t too worried. After all, Stanford was an in-network provider for her insurer — and her insurance, one of her benefits as an employee of the state of California, always had been reliable. Then the bill came. (Stanford Health Care’s list price is a whopping $399 per allergen.)
• Got Food Allergies? Add Milk To The Worries For Your Meal New research on food allergies finds that milk allergies pose not only a medical, but also a financial burden for families. In fact, the condition registered the highest average number of services per patient of any food allergy in 2016 — outpacing even the widely publicized allergies to peanuts and shellfish, according to the analysis by Fair Health, a nonprofit that manages a database of private insurance claims and provides cost information to the health care industry and consumers. Still, the study found that peanuts outranked all other single food allergens in causing severe and sometimes fatal reactions known as anaphylaxis.
• Think You're Allergic to Penicillin? Maybe Not, Specialists Say, and That's Worth Knowing (Carey Goldberg, CommonHealth, WBUR, 1-18-19) Specialists at Massachusetts General Hospital and around the country are calling for more testing of whether patients are really allergic, because research finds that most who've been told in the past that they are allergic to penicillin actually are not. And that matters for their care. People believed to be allergic are likely to be given "broader-spectrum" antibiotics, which contributes to the rise of resistant superbugs.
• Support groups for people with asthma (Asthma and Allergy Foundation of America)
• Asthma Action Plan (Asthma and Allergy Foundation of America) Everyone with asthma should have an Asthma Action Plan in writing. This plan provides information and instructions on how you can manage your asthma. It includes:
---Medicines
---Recognizing when your symptoms get worse
---What to do in an emergency.
• What do I need to know about asthma medicines? (Asthma and Allergy Foundation of America)
• 4 Things You Must Know About the Flu If You Have Asthma (Asthma and Allergy Foundation of America)
• Don't Kill the Birthday Girl: Tales from an Allergic Life by Sandra Beasley. Beasley's allergies —severe and lifelong—include dairy, egg, soy, beef, shrimp, pine nuts, cucumbers, cantaloupe, honeydew, mango, macadamias, pistachios, cashews, swordfish, and mustard--and that's just the food allergies. A memoir with explanations, for any family dealing with allergies.
• Immunotherapy (allergy shots) effective for baby boomers suffering from seasonal allergies (press release, American College of Allergy, Asthma, and Immunology) Symptoms were reduced by 55 percent after 3 years of therapy
• Medicare EpiPen spending outpaces prescription growth -Kaiser report (Reuters Market News, 9-20-16) U.S. government spending on Mylan Inc's EpiPen in the Medicare program for seniors and the disabled rose 1,151 percent from 2007 through 2014, while the number of EpiPen users grew 164 percent, the Kaiser Family Foundation said on Tuesday in an analysis. In 2007, when Mylan purchased EpiPen, the Medicare program spent $7 million on the product for 79,980 users, Kaiser said. In 2014, that spending rose to $87.9 million for 211,500 users, Kaiser said.
• The Boy With a Thorn in His Joints (Susannah Meadows, NY Times Magazine, 2-1-13). On leaky gut syndrome, food (and medical) allergies linked to the sustained inflammation that characterizes autoimmune arthritis, and ways of changing the gut bacterial population (including probiotics, fish oil, and fecal transplant).
• Farm kids at lower allergy risk, even in their 70s (Anne Harding, Reuters Health, 6-1-10) Researchers in Sweden found that people who spent the first five years of their lives on a farm were about 20 percent less likely to have itchy, runny eyes and noses due to allergies, from age 16 up through to age 75. Only farms with livestock confer this protection, Eriksson noted. How contact with farm animals might cut allergy risk isn't clear, he added, although drinking unpasteurized milk and exposure to certain types of bacteria are two mechanisms that have been proposed.

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Alopecia areata

("spot baldness")

Alopecia areata, also known as spot baldness, is a condition in which hair is lost from some or all areas of the body. Often it results in a few bald spots on the scalp, each about the size of a coin. Psychological stress may result. People are generally otherwise healthy. Treatment can help, but this condition can't be cured.
•What Is Alopecia? Oscars Spat Centers On Hair Loss Condition (Lindsey Tanner, AP News,5-28-22) The National Alopecia Areata Foundation says the condition affects about 2% of the population, or as many as almost 7 million Americans. It can occur at any age, but most often during the teen years or young adulthood. Jada Pinkett Smith is 50. Other public figures with the condition include Ayanna Pressley, a Democratic congresswoman from Massachusetts, British actor and comedian Matt Lucas and bluegrass musician Molly Tuttle. Alopecia tends to run in families. Total hair loss affecting the entire body can happen, but is rare. The condition can also cause dents and ridges in fingernails and toenails, but affected people are otherwise healthy.
• Rep. Ayanna Pressley Discusses Alopecia (YouTube video, The Roots' op-ed video series, 1/16/20) Her official public revealing. See especially this video: Rep. Ayanna Pressley’s Floor Speech on Alopecia Awareness Month
• Oscars feud was a ‘missed opportunity’ to educate public, say women with alopecia (Elizabeth Chuck and Claretta Bellamy, NBC News, 3-28-22) Chris Rock’s comments about Jada Pinkett Smith stirred painful memories for others with her condition. Not all agreed with how Will Smith, her husband, responded. Some said Smith’s response ruined the chance to educate the public about a rare disease that, while it is not physically painful, can be incredibly isolating.
• Hair loss types: Alopecia areata diagnosis and treatment(American Academy of Dermatology)
• National Alopecia Areata Foundation (NAAF) Need support? Call (833)438-6223 or (833)GET-NAAF. Get info and support, and maybe buy products such as head coverings, wigs, and natural looking false eyelashes and eyebrows.
• Hair loss types: Alopecia areata signs and symptoms (American Academy of Dermatology). Images illustrate various signs and symptoms, types of hair loss.
• What you need to know about alopecia areata (National Alopecia Areata Foundation) Alopecia areata is a common autoimmune skin disease, causing hair loss on the scalp, face and sometimes on other areas of the body. In fact, it affects as many as 6.8 million people in the U.S. with a lifetime risk of 2.1%.
• What's to know about alopecia areata? (Medical News Today) Causes, symptoms, and treatment.

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Alzheimer's disease
This section grew so big I moved it to its own page, where you can find:
• ALZHEIMER'S DISEASE AND OTHER FORMS OF DEMENTIA
(material that applies to them all)
• Caring for patients with dementia
• Alzheimer's disease
• Frontotemporal and other non-Alzheimer's dementia
• Helpful books about caregiving for dementia
• Dementia signs, symptoms, testing, and diagnosis
• Alzheimer's and dementia support groups and organizations
• Dementia news and research
• Blogs about Alzheimer's, dementia, and caregiving

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Asthma

• Allergic and Environmental Asthma: Overview of Asthma (William F Kelly III and Michael A Kaliner, Medscape)
• Asthma In-Depth Report (New York Times)
• The Air Between Us All Sparks Transparent Conversations About Asthma (Amgen, 3-1-23) “The Air Between Us All” is a multi-channel campaign to illuminate the impact of asthma on relationships, both romantic and platonic, and communicate the importance of open and honest conversations in strengthening these connections. In partnership with the Asthma and Allergy Foundation of America (AAFA), Amgen surveyed over 700 people living with asthma and caregivers to shed some light on the realities of this condition. Some findings:
---4 out of 5 people with asthma say their family and friends are not very involved in their asthma management.
---Nearly half (47%) of people with asthma feel that friends, family, and significant others don’t consider their condition when planning social gatherings.
---Nearly half (46%) of people with asthma agree that their condition can get in the way of important moments with a significant other.
---51% of people with asthma feel their disease has a big impact on their overall well-being.
• She couldn’t stop coughing. Were fragrances to blame? (Sandra G. Boodman, Medical Mysteries, WaPo, 7-27-15) For 20 years she took medications to control adult-onset asthma. Then coughing fits at work whenever she encountered a fragrance put her job at risk.
• Could Better Inhalers Help Patients, and the Planet? ( Martha Bebinger, WBUR and KFF Health News, 5-6-24) "Samantha Green, a family physician in Toronto, said clinicians can make a big difference with inhaler emissions by starting with the question: Does the patient in front of me really need one?nGreen, who works on a project to make inhalers more environmentally sustainable, said that research shows a third of adults diagnosed with asthma may not have the disease.
“So that’s an easy place to start,” Green said. “Make sure the patient prescribed an inhaler is actually benefiting from it.”

Green said educating patients has a measurable effect. In her experience, patients are moved to learn that emissions from the approximately 200 puffs in one inhaler are equivalent to driving about 100 miles in a gas-powered car. Some researchers say switching to dry powder inhalers may be as beneficial for the climate as a patient adopting a vegetarian diet.

Miguel Divo, a lung specialist at Brigham and Women's Hospital in Boston, has begun offering a more eco-friendly option to some patients with asthma and other lung diseases: a plastic, gray cylinder about the size and shape of a hockey puck that contains powdered medicine. Patients suck the powder into their lungs — no puff of gas required and no greenhouse gas emissions.
• Kudos to Boston Children’s Hospital for release on acetaminophen and asthma study (HealthNewsReview, 8-31-16) Results from a study published in the New England Journal of Medicine on the first randomized, double-blind, controlled trial comparing acetaminophen to ibuprofen to treat pain and fever in children with asthma. No statistically significant differences were found between the two treatment arms. Previous observational studies had suggested that acetaminophen could exacerbate asthma symptoms in young children.Acetaminophen use will not worsen asthma symptoms in young children, according to a well-designed study. The acetaminophen medication used in the study, Little Remedies, costs about 50 percent more than the generic Children’s Advil – $8.86 versus $4.96, respectively – at Walmart. Do read the whole HNR entry.
• An asthma journal and why you need one (Asthma.net). See also Common asthma triggers (Asthma.net)
• New treatment for severe asthma (Science Daily report on research at McMaster University, 5-22-18) Researchers have developed a new method to treat severe asthma. In a study of over 200 participants with severe asthma, the new treatment was shown to have improved asthma symptoms and lung function, while reducing the need for corticosteroids by up to 70%.
• A Breathing Technique Offers Help for People With Asthma (Jane E. Brody, Health, NY Times, 11-2-09) About the Buteyko method, a shallow-breathing technique developed in 1952 by Russian doctor Konstantin Buteyko.
• Catching My Breath: An Asthmatic Explores His Illness by Tim Brookes
• Nearly Half of Older Adults With Asthma, COPD Still Smoke: CDC (Health Day, 1-7-15) Quitting is 'challenging' and depression often plays a role, one expert says.
• Biden and Sen. Bernie Sanders join forces to promote lower health care costs, including for inhalers (Darlene Superville, AP News, 4-3-24) Biden and Sanders fought for the lower health care costs that come through the Democrats’ sweeping climate, health care and tax package that Biden signed into law in 2022. It caps various health care costs for those on Medicare, including $35 a month for insulin and $2,000 a year for prescription drugs. No Republican lawmakers voted for the law. Both Biden and Sanders supported pressuring most major inhaler manufacturers to cap the costs of the devices to no more than $35 a month. Otherwise, the purchase price of inhalers ranges somewhere between $200 to $600 without insurance.
• Hospitals find asthma hot spots more profitable to neglect than fix (Jay Hancock, Rachel Bluth of Kaiser Health News and Daniel Trielli of Capital News Service, Washington Post, 12-4-17) Baltimore paramedic crews make more asthma-related visits per capita in 21223 than anywhere else in the city, according to fire department records. It is the second-most-common Zip code among patients hospitalized for asthma, which, when addressed properly, should never require emergency visits or hospitalization. This neighborhood in southwest Baltimore is in the shadow of prestigious medical centers — Johns Hopkins, whose researchers are international experts on asthma prevention, and the University of Maryland Medical Center (UMMC). Both receive massive tax breaks in return for providing “community benefit,” a poorly defined federal requirement that they serve their neighborhoods. But like hospitals across the country, the institutions have done little to address the root causes of asthma. The perverse incentives of the health-care payment system have long made it far more lucrative to treat severe, dangerous asthma attacks than to prevent them.
• More Menopausal Women Hospitalized for Asthma, Study Finds (Health Day, 9-3-13)
• American Academy of Allergy Asthma & Immunology
• Asthma May Influence Risk of Parkinson's Disease (HealthDay News, via Northwest Parkinson's Foundation, 9-4-15)
• Shingles Risk 70% Higher for Adults With Asthma (Marcia Frellick, Medscape Medical News, 1-6-16) Note: Medscape requires free registration before providing articles.
• Older asthma patients at increased risk for treatment failure (HealthDay News, via Pollen.com, 6-12-15) Asthma treatments, especially inhaled corticosteroids, are less likely to work for older patients, a new study suggests.
• Men with Asthma Less Likely to Develop Lethal Prostate Cancer (Johns Hopkins Medicine, 5-13-15) Observational study does not prove cause and effect, researchers caution.
• Older women with asthma: special challenges in treatment and self-management (Alan P. Baptist et al., Ann Allergy Asthma Immunol. 2014 Aug; 113(2): 125–130, via NCBI)
• Rituals Can Help Older People Remember to Take Their Asthma Meds (Science Newsline, 8-5-14) Storing it in the bathroom and making it part of a daily routine may be helpful advice that doctors can give their older asthmatic patients who struggle to remember to take their daily prescribed medication.
• 50 Years On: Severe Childhood Asthma Persists in Middle Age (Medscape, via World Asthma Foundation)
• First-Year Allergen Exposure Reduces Asthma, Allergy Risk (Journal of Allergy and Clinical Immunology, via World Asthma Foundation)
• Grandmothers Who Smoke Cigarettes During Pregnancy May Increase Asthma Risk In Grandchildren Even if the mother did not smoke while pregnant. (Tanya Basu, American Association for the Advancement of Science, via Time, 9-29-15) The results of a Swedish study indicated that when a grandmother smoked while pregnant—regardless of whether the mother did as well—a child’s risk of asthma increased from 10 to 22%. Researchers think this shows that people can inherit a risk for asthma from previous generations. Scientists have long known that tobacco can affect gene expression, but researchers wondered if these affected genes were passed on to posterity.
• Seniors Undertreated for Asthma, and Many Skip Inhalers (U.S. News & World Report, HealthDay News) Asthma often is misdiagnosed and undertreated in older people, with only 53 percent of those with asthma using prescribed inhalers, a small new study suggests.
• Estrogen-only HRT may increase risk of asthma after menopause Estrogen-only hormone replacement therapy (HRT) may increase the risk of developing asthma after menopause, suggests a large scale study published ahead of print in the journal Thorax. Previous research has suggested that female hormones may have a role in the development and severity of asthma, say the authors. The disease is more common in young women after they have started having periods, while hospital admissions for asthma are more common among women than men.
• Asthma: Latest research and reviews in Nature Asthma is a form of bronchial disorder caused by inflammation of the bronchi. It is characterized by spasmodic contraction of airway smooth muscle, difficulty breathing, wheezing and coughing. Links here are to pretty specific studies that might not offer practical immediate help to asthma sufferers!
• Baltimore Nonprofit Hospitals Find Asthma Hot Spots More Profitable to Neglect Than Fix (Jay Hancock, Rachel Bluth, and Daniel Trielli, Kaiser Health News, 12-6-17) Months of reporting and rich hospital data portray life in the worst asthma hot spot in one of the worst asthma cities: Baltimore. The medical system knows how to help. But there’s no money in it. Baltimore paramedic crews make more asthma-related visits per capita in 21223 than anywhere else in the city, and that neighborhood in southwest Baltimore is in the shadow of prestigious medical centers — Johns Hopkins, whose researchers are international experts on asthma prevention, and the University of Maryland Medical Center. Both receive massive tax breaks in return for providing “community benefit,” a poorly defined federal requirement that they serve their neighborhoods. But like hospitals across the country, the institutions have done little to address the root causes of asthma. The perverse incentives of the health care payment system have long made it far more lucrative to treat severe, dangerous asthma attacks than to prevent them. The esearch on asthma triggers is unequivocal. “It’s the environment — the moist environments that encourage the mold, the ticks, the fleas, the mice, the roaches,” said Ben Carson in an interview.

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Aneurysms and AVMs

• The Aneurysm and AVM Foundation (TAAF, In 2005 a group of medical professionals, survivors and caregivers briefly formed the Foundation for Brain Aneurysm and Vascular Malformations. The primary focus was to provide motivational and other educational resources to the patient and caregiver community, and to increase public awareness. With similar visions and complementary goals, these foundations merged to expand The Aneurysm Foundation into the present day foundation now known as ‘The Aneurysm and AVM Foundation’ (TAAF).

Cerebral aneurysms

• What You Should Know About Cerebral Aneurysms (American Stroke Association) Good basic explanation with answers to common questions.
Cerebral Aneurysms Fact Sheet (National Institute of Neurological Disorders and Stroke, or NINDS)
• About Brain Aneurysm (The Aneurysm and AVM Foundation). Good illustrations, explanations.
• Brain Aneurysm: Treatments and Drugs (Mayo Clinic)
• More about Aneurysms (AVM Awareness Project)

• In My Time of Dying: How I Came Face to Face with the Idea of an Afterlife by Sebastian Junger (masterfully braids together "a discussion of family, near-death experiences, quantum physics, and the miracle of modern medicine")
---Sebastian Junger Is Reporting Live From the Brink of Death (Elisabeth Egan, NY Times, 5-21-24) In his new memoir, the veteran journalist makes sense of — and an uneasy peace with — an experience few have survived.
• A Bomb in the Brain: A Heroic Tale of Science, Surgery, and Survival (Steve Fishman's book about about surviving an aneurysm explains the brain in a way that may also interest brain tumor patients). Similarly you may be interested in Jimmy Breslin's book, I Want to Thank My Brain for Remembering Me (about surviving his aneurysm)
• Suddenly, my life changed . Judy Steed developed an aneurysm behind her right eye, which made her see what aging really looks like. (Toronto Star print story and video, 11-8-08)
• Stir: My Broken Brain and the Meals That Brought Me Home by Jessica Fechter. "“Pairing food with the nightmare of surviving a brain aneurysm shouldn't work — but under Jessica Fechtor's wise and wonderful narration, the pairing not only works, it shines.” ~Susannah Cahalan, author of Brain on Fire
• A Battle for My Life (Emilia Clarke, New Yorker, 3-21-19) I had just finished filming Season 1 of “Game of Thrones.” Then I was struck with the first of two aneurysms.
• How a brain aneurysm helped CNBC's Sharon Epperson embrace change (Halley Bondy, NBC News, 12-19-19) “There is a plan out there for us that we don't know, but we just have to follow it ... " says Epperson.
• A Bomb in the Brain: A Heroic Tale of Science, Surgery, and Survival (Steve Fishman's book about about surviving an aneurysm explains the brain in a way that may also interest brain tumor patients). Similarly you may be interested in Jimmy Breslin's book, I Want to Thank My Brain for Remembering Me (about surviving his aneurysm)
• Suddenly, my life changed . Judy Steed developed an aneurysm behind her right eye, which made her see what aging really looks like. (Toronto Star print story and video, 11-8-08)
• Tips for living and coping (American Brain Tumor Association)
• Stir: My Broken Brain and the Meals That Brought Me Home by Jessica Fechter. "“Pairing food with the nightmare of surviving a brain aneurysm shouldn't work — but under Jessica Fechtor's wise and wonderful narration, the pairing not only works, it shines.” ~Susannah Cahalan, author of Brain on Fire
• Brain Aneurysm Foundation (BFA) Explore the site to find brief explanations and other resources.

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Arteriovenous malformation (AVM)

• What Is an Arteriovenous Malformation (AVM)? (American Stroke Association)
• AVM Awareness Project "Arteriovenous Malformation is a type of vascular malformation (abnormal network of blood vessels), where arteries shunt directly into veins instead of going through a bed of capillaries." Excellent link directory.
• Arteriovenous malformation (AVM) (Mayfield Brain & Spine) "An arteriovenous malformation (AVM) is an abnormal tangle of blood vessels in the brain or spine. Some AVMs have no specific symptoms and little or no risk to one’s life or health, while others cause severe and devastating effects when they bleed. Treatment options range from conservative watching to aggressive surgery, depending on the type, symptoms, and location of the AVM."

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Autism spectrum disorders

• Ido in Autismland: Climbing Out of Autism's Silent Prison by Ido Kedar "opens a window into non-verbal autism through dozens of short, autobiographical essays each offering new insights into autism symptoms, effective and ineffective treatments and the inner emotional life of a severely autistic boy. In his pithy essays, author Ido Kedar, a brilliant sixteen year old with autism, challenges what he believes are misconceptions in many theories that dominate autism treatment today while he simultaneously chronicles his personal growth in his struggles to overcome his limitations."
• This Dad Knew Exactly What to Do When His Autistic Son No Longer Qualified for Services (Liz Palmer, 22 Words, 2-27-15) "He worries about what will happen to him when he hits 22 and “flies off the cliff”…the cliff of services, support. This is a reality for the autistic community. At 22 you age out. No supports. Few opportunities. A lack of purpose. And sometimes no hope." "So he came up with a crazy idea." Let this inspire others!
• Autism, What it is (a wonderful explanation by John Elder Robinson, author of two fascinating books on the subject: Raising Cubby: A Father and Son's Adventures with Asperger's, Trains, Tractors, and High Explosives and Look Me in the Eye: My Life with Asperger's as well as the somewhat more advice-oriented Be Different: My Adventures with Asperger's and My Advice for Fellow Aspergians, Misfits, Families, and Teachers
• Loving Lampposts: Living Autistic (DVD and can be viewed on Amazon Prime). Todd Drezner's highly rated documentary about autism, how society views the diagnosis, and how that affects the way autistic people are treated (personally and medically). He examines two movements--the "recovery movement," which views autism as an epidemic brought on by environmental toxins, and the "neurodiversity movement," which argues for accepting autism and supporting autistic people).
• Autism News Beat (an evidence-based resource for journalists, which has a blog roll along the right side, down a bit). See, for example, Live blogging the autism hearing (Autism News Beat 5-20-14)
• How Will I Know You're Not Dead? (Raymond Abbott, Pulse, 4-10-15). See also I'm happy (Pulse, 1-2-15). A social worker's lovely stories about Donald, a client with Asperger’s and Tourette’s).
• National Network for Immunization Information (NNii)
• The Kids Who Beat Autism (Ruth Padawer, NY Times Magazine, 7-31-14) New research suggests that one in 10 autistic children sheds symptoms before adulthood. But no one knows why they do — or why others do not. This fascinating story, which among other things discusses A.B.A. therapy, a form of behavioral therapy, emphasizes autism's complexities--including what some kids feel when their symptoms, including arm flapping, go away. “When I was little, pretty often I was the happiest a person could be," says Carmine DeFloria. "It was the ultimate joy, this rush in your entire body, and you can’t contain it. That went away when my sister started teasing me and I realized flapping wasn’t really acceptable. Listening to really good music is the main time I feel that joy now. I still feel it in my whole body, but I don’t outwardly react to it like I used to.” See also Padawer's answers to Readers’ Questions About Children Who Beat Autism.
• One Smart Bookie (Jack El-Hai, The Atlantic, May 2001) "He can't tell right from wrong." Jack profiles Max Weisberg, a man with savant syndrome—"someone who has special abilities that stand in stark contrast to his overall handicap... He made legal history when he hired a criminal defense attorney who asserted that Max’s disabilities made him incapable of distinguishing right from wrong."
• Extraordinary People : Understanding Savant Syndrome by Darold A. Treffert, author also of Islands of Genius: The Bountiful Mind of the Autistic, Acquired, and Sudden Savant
• Don't Mourn for Us (Jim Sinclair, Autism Network International newsletter,1993). As quoted in Ruth Padawer's article, "Autism, Sinclair wrote, “colors every experience, every sensation, perception, thought, emotion and encounter, every aspect of existence. It is not possible to separate the autism from the person — and if it were possible, the person you’d have left would not be the same person you started with. . . . Therefore, when parents say, ‘I wish my child did not have autism,’ what they’re really saying is, ‘I wish the autistic child I have did not exist and I had a different (nonautistic) child instead.’ . . . This is what we hear when you pray for a cure.”
• Autistic Self-Advocacy Network (ASAN), a national group run by and for autistic adults ("nothing about us without us")
• The Frowners (RadioLab, 12-29-08) Ever since Emanuel Frowner was a little boy, Emanuel was... different. He had trouble making friends. He had trouble looking you in the eye. His brother thought he needed psychological help, but his dad didn’t think there was anything seriously wrong, and worried that a diagnosis would hold him back. Flash forward 25 years, Emanuel’s now a grown man who’s sought a psychological diagnosis. What he finds out will change everything. But the tough question remains, did his dad’s attitude end up helping or hurting him in the end? Reporter Gregory Warner takes us on a search for answers. And do read the comments.
• The Geek Syndrome (Steve Silberman, Wired, Autism--and its milder cousin Asperger's syndrome--is surging among the children of Silicon Valley. Are math-and-tech genes to blame? Fascinating overview of recent history.
• Aspergirls: Empowering Females With Asperger Syndrome by Rudy Simone. Why this book? Because Aspergers presents differently among girls and women.
• What Is It About Autism and Trains?! (developmental pediatrician Amanda Bennett, Autism Speaks, 9-12-14)
• Autism Awareness Is Not Enough: Here’s How to Change the World (Steve Silberman PLoS blog, 4-2-12) One in 88 kids are somewhere on the autism spectrum. Research focuses on genetic and environmental risk factors — not on improving the quality of life for the millions of autistic adults who are already here, struggling to get by.
• World Autism Awareness Day (April 2)
• Asperger's Syndrome: A Guide for Parents and Professionals by Tony Attwood (foreword by Lorna Wing). See also Attwood'sThe Complete Guide to Asperger's Syndrome
• Life, Animated: A Story of Sidekicks, Heroes, and Autism by Ron Suskind. The story of Owen Suskind, an autistic boy who couldn't speak for years, who memorized dozens of Disney movies, "turned them into a language to express love and loss, kinship, brotherhood.The family was forced to become animated characters, communicating with him in Disney dialogue and song; until they all emerge, together, revealing how, in darkness, we all literally need stories to survive." Will be made into a movie.
• Autism Spectrum Disorders: A Parent’s Guide to Symptoms and Diagnosis on the Autism Spectrum. Autism is not a single disorder, but a spectrum of closely-related disorders with a shared core of symptoms. An informative page.
• Weighted Blankets: The Ultimate Use Of Calming Input For A Restful Sleep (Sensory Processing Disorders)
• Scratching the Horizon: A Surfing Life by Izzy Paskowitz with Daniel Paisner A book about surfing, the bohemian life, family, and being the father of a son with autism as well as founder of Surfers Healing.
• Kerry Magro on Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) (Autism Speaks) Kerry (diagnosed with PDD-NOS at age 4) produces “Kerry’s Korner,” an ongoing video series on YouTube.
• The iPad: a Near-Miracle for My Son With Autism (Shannon Des Roches Rosa, BlogHer, 6-15-10) Great tips on apps that help her son draw, write, etc.
• Reaching My Autistic Son Through Disney (Ron Suskind, NY Times Magazine, 3-7-14). A must-read piece about regressive autism -- and don't skip the comments.
• A Parent’s Guide to Autism Spectrum Disorder (National Institute of Mental Health)
• The Truth About Autism: Scientists Reconsider What They Think They Know (David Wolman, Wired magazine, 2-25-08). "...Mottron and other scientists have 'found universal strengths where others usually look for universal deficits.' Neuro-cognitive science, [Amanda Baggs] says, is finally catching up to what she and many other adults with autism have been saying all along.'
• (Steve Silberman, Wired, 10-6-10)
• Are You On It? If so, you're in good company. From Asperger’s to “Asperger’s,” how the spectrum became quite so all-inclusive. (Benjamin Wallace, New York, 10-28-12).
• Temple Grandin: The world needs all kinds of minds (a super Ted Talk, Feb. 2010). "To understand animals, autism, and art requires getting away from verbal language."
• Autism blog (Psychology Today)
• Brain Changes Suggest Autism Starts In The Womb (Jon Hamilton, Shots, NPR, 3-26-14). Listen or read transcript.
• Autism Tissue Program (ATP)
• The Autism Advantage (Gareth Cook, NY Times, 11-29-12) Looking beyond stereotypes, high and low.
• Autism on the Farm: A Story of Triumph, Possibility and a Place Called Bittersweet by Linda H. Davis (Kindle edition). Adults with autism have found a place at Bittersweet, a small farming community. Overseen and taken care of by trained volunteers, residents find ways to find safe and meaningful experiences through farm work.
• What I Learned from My Autistic Son: A Guest Post by Brenda Rothman (PLoS blog, 4-1-13)
• What it's like to have a Brother with Autism (3-minute YouTube video, by Spencer Timme, about his brother Mitchel)
• Autism Society of America (ASA)
• AutismOne , a nonprofit, parent-driven organization that provides education and supports advocacy efforts for children and families touched by an autism diagnosis, holding the largest and most comprehensive annual autism conference in the USA.
• Desktop Diaries: Temple Grandin (Science Friday video, with Grandin explaining her autism thus: "I'm pure geek, pure logic." Missing a few social-interaction skills puts her in good company with geeks, whom we don't value enough. We have better cattle slaughter facilities in America, but not enough well-trained geeks.
• The difference between ability and capability in Asperger's Syndrome (Planet Ace, 7-1--08)
• OASIS (Online Asperger Syndrome Information & Support)
• WrongPlanet.net (Web community and resource for individuals, and parents of those, with Asperger's Syndrome, autism, ADHD, and other PDDs). See WrongPlanet video interviews, etc. on YouTube and Autism Talk TV
• Aspergian Pride (extensive links to resource and advocacy sites, including sites promoting neurodiversity as the next civil rights issue)
• The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism by Naoki Higashida. Read online David Mitchell's introduction, A Peek Inside My Son's Head, by the author of Cloud Atlas on why he translated a book by a 13-year-old Japanese boy with autism. "Reading it felt as if, for the first time, our own son was talking to us about what was happening inside his head, through Naoki’s words," writes Mitchell.
• David Mitchell: learning to live with my son's autism (David Mitchell, The Guardian, 6-28-2013) Novelist David Mitchell looks back on the heartbreak – and joy – of learning that his son had autism. Plus, an extract from the book by a young Japanese boy that helped him.
• The Reckoning: The Father of the Sandy Hook Killer Searches for Answers (Andrew Solomon, New Yorker 3-17-14). A painfully honest piece; I keep wondering what I would have done.
• Adults and Autism: An Answer, but Not a Cure, for a Social Disorder That Isolates Many (Amy Harmon, NYTimes, 4-29-04), on Asperger's syndrome)
• Answer, but No Cure, for a Social Disorder That Isolates Many (Amy Harmon, NYTimes, 4-29-04, on Asperger's syndrome)
• Remembering Dr. Lorna Wing (this piece by Penumbrage is an interesting piece of history about our very recently changing understandings of autism, and her contributions to a more sophisticated understanding.
• Navigating Love and Autism (Amy Harmon, New York Times, Autism Grown Up, Love on the Spectrum, 12-26-11). The moving and enlightening love story of Jack Robison and Kirsten Lindsmith, both of whom fall on the autism spectrum. "Only since the mid-1990s have a group of socially impaired young people with otherwise normal intelligence and language development been recognized as the neurological cousins of nonverbal autistic children. Because they have a hard time grasping what another is feeling — a trait sometimes described as 'mindblindness' — many assumed that those with such autism spectrum disorders were incapable of, or indifferent to, intimate relationships."
• Asperkids: An Insider's Guide to Loving, Understanding, and Teaching Children with Asperger's Syndrome by Jennifer Cook O'Toole and The Asperkid's (Secret) Book of Social Rules: The Handbook of Not-so-obvious Social Guidelines for Tweens and Teens With Asperger Syndrome, (both listed on (one of 15 books to read if your loved one is diagnosed with ASD (Asperger's Digest)
• Mothers Grapple With Autism's Impact On Siblings (Tara Boyle, Metro Connection, WAMU, NPR, 5-10-13)
• Pathfinders for Autism. Provides resources and information for Maryland families (a good role model for other states) and volunteers help train police and other officials on how to interact with people with an autism disorder.
• Genius locus: Autism and extraordinary ability (The Economist 4-16-09). There is strong evidence for a link between genius and autism. In the first of three articles about the brain, the Economist asks how that link works, and whether “neurotypicals” can benefit from the knowledge
• A Family's Guide to Community-Based Instruction for Students with Disabilities (New Jersey Dept of Education)
• Not more, just different (The Economist 4-10-08). An explanation for the increasing incidence of autism
• A cry for help: Why some children with autism suffer in mainstream schools (The Economist 5-25-06)
• Autistic and Seeking a Place in an Adult World (Amy Harmon, New YorkTimes 9-17-11).
• Are we autistic people shaping the public's view of autism in ways harmful to our cause? by John Elder Robison, author of Look Me in the Eye: My Life with Asperger's and Raising Cubby: A Father and Son's Adventures with Asperger's, Trains, Tractors, and High Explosives
Social Stories (a tool for teaching social skills to children with autism and related disabilities)
• The Spark: A Mother's Story of Nurturing Genius by Kristine Barnett. Barnett’s son Jacob has an IQ higher than Einstein’s, a photographic memory, and he taught himself calculus in two weeks. At age two, when Jake was diagnosed, she was told he might never be able to tie his own shoes. Against the advice of her husband, Michael, and the developmental specialists, Kristine followed her instincts, pulled Jake out of special ed, and began preparing him for mainstream kindergarten on her own, resolved to follow his special interests--his "spark."
• Article linking autism to vaccination was fraudulent. Fiona Godlee, editor in chief, Jane Smith, deputy editor, and Harvey Marcovitch, associate editor, British Medical Journal 5 Jan 2011. A 1998 Lancet paper, chiefly by Andrew Wakefield, implied a link between the measles, mumps, and rubella (MMR) vaccine and a “new syndrome” of autism and bowel disease. Clear evidence of falsification of data in that article should now close the door on this damaging vaccine scare, write BMJ's top editors. In a seven-part series, journalist Brian Deer shows the extent of Wakefield's fraud and how it was perpetrated: How the case against the MMR vaccine was fixed[Back to Top]

Back pain, chronic

• The Back Book (forgot your fear--get moving again, and here's how). This is the booklet featured in this "randomized controlled trial of a novel educational booklet in primary care." Information and advice to patients with low back pain can have a positive effect.
• Handout on Health (Back Pain) (National Institute of Musculoskeletal and Skin Diseases, or NIAMS)
• Back Pain Resources --an excellent list of resources by Cathryn Jakobson Ramin, author of forthcoming book The Fragile Column: How to Beat the Back Pain Industry at Its Own Game . Read this Q&A, by Barbara Feder Ostrov I've provided links below to some of those resources (and others), but Ramin explains and comments about them. Scroll down on Ramin's Resource page to find her recommendations for exercise and rehab specialists she has found particularly helpful.
• New Thinking About Back Pain (PDF, Richard A. Deyo, MD, explains what was wrong with back treatment in August 1998, when this article ran in Scientific American). See also:
• Is Back Surgery Worth It? An interview with the country’s leading back pain researcher (Center for Medical Consumers interview with Richard A. Meyo, MD, 10-1-07) and Back Pain and the herniated disc (Dr. Meyo interviewed by Maryann Napoli, Center for Medical Consumers, 2-25-10).
• American Academy of Physical Medicine and Rehabilitation . See what they say about Physiatrists, or rehabilitation physicians , nerve, muscle, and bone experts who treat injuries or illnesses that affect how you move.
• The Balance Center (videos) "80% of the population in the United States suffers from back pain, compared to only 5% in many other countries, such as Portugal and Greece. These healthy people move slightly differently than we do. The teaching at the Balance Center is based on 35 years of research among these healthy populations. When you stand, bend, sit, and walk as these people do, your pain will be significantly reduced or eliminated."
• Association of Academic Physiatrists
• Back Care Basics: A Doctor's Gentle Yoga Program for Back and Neck Pain Relief by Mary Pullig Schatz, M.D. (the “barefoot back doctor")
• New Pathways to Overcome Chronic Back Pain (listen to podcast of back surgeon David Hanscom, author of Back in Control: A spine surgeon's roadmap out of chronic pain, on Show 972 of "The People's Pharmacy"). "According to Dr. David Hanscom, a leading spine surgeon, back pain can be overcome, but surgery is frequently NOT the best choice. People with chronic back pain may need to overcome their anger and anxiety and use an integrated approach to build new neural pathways that circumvent the pain. Some of the best tactics include finding a way to play as well as a way to confront anger and find forgiveness." From Goodreads: "Steve tells his compelling story of a 30-year battle with pain and ultimate healing after discovering Dr. Sarno's work. After Steve healed he began receiving hundreds of emails, calls, and letters, asking for his help--too many to respond to, so he decided to write his experience down in a book." See the Goodreads comments on book."This is a more readable book than Sarno's, says one reader.
• Back Pain Blog (UK)
• Abigail Rasminsky's posts on back pain, especially Mini History of Aplomb, Part 1; or Why You’re Not Standing Correctly (3-25-12). See also I'm Off to See the Wizard (3-4-12, about Noëlle, the Spine Whisperer) and I'm in Paris (3-7-12).3-4-12) . See also these videos from the Balance Center.
• Simple Qigong Exercises—for Back Pain Relief (Dr. Yang and Jwing-Ming)
• BackFitPro.com (Dr. Stuart McGill, who practices in Ontario, Canada)
• The International Society of Clinical Rehab Specialists (ISCRS)
• American College of Sports Medicine (ACSM) (find someone near you with their Profinder search)
• Standing Desks (Uncaged Ergonomics), of which they say this is the best version ($125). Affordably convert any table to an ergonomic sit-stand desk.
• A Few Thoughts on Why—And When—We Exercise (an entry on Cathryn Jakobson Rami's blog, My Back Space). Here are three books she considers worth reading:
~Job’s Body by Dean Juhan
~Discovering the Body’s Wisdom by Mirka Knaster (old and new bodywork therapies)
~Back Sense: A Revolutionary Approach to Halting the Cycle of Chronic Back Pain by Ronald D. Siegel, MD, Michael H. Urdang, and Douglas R. Johnson, MD
~JFK's Secret Doctor: The Remarkable Life of Medical Pioneer and Legendary Rock Climber Hans Kraus by Susan E.B. Schwartz.

SEE ALSO
• Managing chronic pain

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Black lung disease

• Struggling for Breath in Coal Country (The Frontline Dispatch, PBS, in collaboration with NPR, 1-24-19) “The only thing I could liken it to is like if somebody ever holds you underwater ‘till you thought you was gonna drown. And when you come up, you’re gasping for air. That’s about what it’s like, you know, when you have a lung attack,” says Jack Horne, a former coal miner living with black lung disease. The intimate stories of coal miners from Appalachia who reflect on living with the disease and who they blame for the tragedy.
• What happens when you breathe (Brooke Jarvis, New Yorker, 1-25-21) Our lungs sustain a delicate equilibrium in our bodies, while exposing us to a world that seems increasingly out of balance. More than just simple pumps, the lungs are portals to our environment.
• Breath Taking: The Power, Fragility, and Future of Our Extraordinary Lungs by Michael J. Stephen.“In a time when we had our most powerful antibiotics, New York was doing worse than Dr. Biggs had done ninety years before, with education and no antibiotics at all.” The story is a reflection of the remarkable fact that, in the twentieth century, an era of astounding medical breakthroughs, simple—and relatively inexpensive—public-health interventions saved more lives than clinical medicine did.~Brooke Jarvis
• Coals Deadly Dust A film from FRONTLINE and NPR that aired 1-22-19. You can watch online. NPR Correspondent Howard Berkes set out to answer the question of whether the resurgence of severe black lung disease in coal miners across Appalachia could have been prevented. This joint investigation reveals the biggest disease clusters ever documented, and how the industry and the government failed to protect miners. After nearly four decades of reporting in rural America, Berkes shares some of his most profound interviews with sick miners in today’s episode. He asks them what it’s like to live with the disease, about the deeply rooted culture of mining in the region, and what they hope to see for future generations of miners.
• Black Lung Disease Comes Storming Back in Coal Country (Nadja Popovich, NY Times, 2-22-18)
• Advanced Black Lung Cases Surge In Appalachia (Howard Berkes, All Things Considered, NPR, 12-15-16) Special series on NPR: Black lung returns to coal country.
• As Mine Protections Fail, Black Lung Cases Surge (Howard Berkes, 7-9-12) An investigation by NPR and the Center for Public Integrity found federal regulators and the mining industry are failing to protect miners from the excessive toxic coal mine dust that causes black lung. The disease is now being diagnosed in younger miners and evolving more quickly to complicated stages.
• Black-Lung Rule Loopholes Leave Miners Vulnerable (Howard Berkes, 7-10-12) An investigation by NPR and the Center for Public Integrity has revealed widespread and persistent gaming of the system that's designed to measure and control the coal mine dust that causes the deadly disease. Control of the mine dust was plagued by weak enforcement by regulators and loopholes exploited by mining companies.

Blood disorders

Anemia, blood cancers (leukemia and myeloma), eosinophilic disorders, hemophilia, immune/idiopathic thrombocytopenic purpura (ITP, acute or chronic), platelet disordersSee also Deep vein thrombosis (DVT)

Medline Plus groups blood disorders as
---Platelet disorders, excessive clotting, and bleeding problems, which affect how your blood clots
---Anemia (when your blood does not carry enough oxygen to the rest of your body)
---Cancers of the blood, such as leukemia and myeloma
---Eosinophilic disorders -- problems with one type of white blood cell.
This assortment of links is by no means complete!
• Types of Blood Disorders (Web MD) A good quick survey and explanation/overview. Blood disorders can affect any of the three main components of blood:

Red blood cells, which carry oxygen to the body's tissues
White blood cells, which fight infections
Platelets, which help blood to clot

• As Red Cross Moves to Pricey Blood Treatment Method, Hospitals Call for More Choice (Julie Appleby, KHN, 5-17-22) Americans generally don’t spend much time thinking about the nation’s blood supply. The American Red Cross, the nation’s single-largest provider of blood products, plans to change how blood platelets are handled, a change that will sharply increase the cost — and, in some cases, the number of transfusions needed — to treat cancer patients, trauma victims, and those undergoing surgery. The Red Cross plans to "exclusively use an expensive technology to reduce the risk of dangerous bacteria tainting platelets. But the move limits hospitals’ choice of less expensive testing options, which are also effective," and are important in rural hospitals, which have smaller budgets.
Under the new recommendations, "hospitals can buy platelets specially processed to reduce pathogens, which is the method the Red Cross and some other, smaller suppliers are moving toward. Or blood centers can test samples of each unit of platelets, looking for bacterial contamination, at least 36 hours after the blood is collected. The other option is to use a rapid test for bacteria shortly before the platelets are transfused, which occurs in addition to a primary screening for bacteria after collection."
• Sunak Apologizes After Damning Report on U.K. Infected-Blood Scandal (Aurelien Breeden, NY Times, 5-20-24) A nearly six-year inquiry found that the deaths of about 3,000 people and the infection of more than 30,000 others could have mostly been avoided. The report found that the British authorities failed to secure a sufficient domestic supply of Factor VIII concentrates from the plasma of U.K. donors, and, in 1973, authorized the import of blood products from the United States and from Austria — even though those treatments “were understood to be less safe than current domestic treatments for bleeding disorders.”
• Bleeding Disorder Organizations (National Hemophilia Foundation)
• Platelet Disorder Support Association (PDSA, for people with ITP)
• Platelet Disorders (Medline Plus, NIH and U.S. National Library of Medicine)
• Patient Groups (American Society of Hematology, or ASH). Links to patient groups for common blood disorders, including anemia, bleeding disorders such as hemophilia, blood clots, and blood cancers such as leukemia, lymphoma, and myeloma. Request the documentary Blood Detectives to screen for your organization.
• Idiopathic Thrombocytopenic Purpura (Johns Hopkins Medicine) What is immune thrombocytopenic purpura? Thrombocytopenia means a decreased number of platelets in the blood. Purpura refers to the purple discoloring of the skin, as with a bruise. ITP is a fairly common blood disorder that both children and adults can develop. There are two forms: Acute thrombocytopenic purpura, which usually affects young children, ages 2 to 6 years old; and Chronic thrombocytopenic purpura, the onset of which can happen at any age--the symptoms of which can last a minimum of 6 months, several years, or a lifetime. Causes, symptoms, diagnosis, treatment, key points, next steps.
• Wish by Spirit: A Journey of Recovery & Healing From an Autoimmune Blood Disease by Joan W. Young. She shares what she has learned about living with immune thrombocytopenia (ITC, a low blood platelet disease), including becoming your own medical advocate. See also her blog and newsletter (at JoanYoungWrites.com)
• What Are Thrombocythemia and Thrombocytosis? (National Heart, Lung, and Blood Institute, NHLBI, on two platelet disorders)
• A bad heart and housemaid's knee (Pat McNees's story about Marian P. and a genetic disorder called sitosterolemia, in which the body absorbs abnormal amounts of plant cholesterol (sitosterol) and, unable to excrete it, deposits it in xanthomas and in the arteries, which leads to heart disease.
• The boy in the plastic bubble (Pat McNees's story about Ted DeVita, who spent eight and a half years in a sterile room in the NIH Clinical Center, being treated for severe aplastic anemia, a rare disease in which the body is suddenly unable to produce new blood cells and platelets)
• What Is von Willebrand Disease? (a clotting disorder)

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Bullous pemphigoid, a rare skin condition that causes large, fluid-filled blisters. The blisters develop on areas of skin that often flex — such as the lower abdomen, upper thighs or armpits. Bullous pemphigoid is most common in people older than age 60.

Blindness, macular degeneration, cataracts, and
other vision problems and disorders

• Top 10 Age-Related Eye Problems (Barbara Stepko, AARP, 9-2-2020) Early detection can keep you seeing clearly. Once over briefly: dry eye, floaters, glaucoma, macular degeneration, catarcts, diabetic retinopathy, detached retina, trichiasis, eye strain, and blepharitis.
• American Foundation for the Blind (AFB)
• Eye Diseases (Medline Plus, news, overviews, diagnosis/symptoms, treatment, prevention, and research)
• National Eye Institute (NEI, National Institutes of Health) Eye anatomy and resources, statistics and fact sheets, news and events, clinical studies, eye diagram, and a cataract resource guide.
• Women's Eye Health. "Two-thirds of blindness and visual impairment occurs in women (partly because they live longer than men); more than 3/4 of visual impairment is estimated to be preventable or correctable; 1/3 of age-related macular disease and cataract may be due to smoking; and 4/5 of blindness and visual impairment occurs in developing countries. Eye diseases are exacerbated by nutritional habits, smoking, and/or environmental insult."
• How an investigation gave voice to people whose bionic eye implants went obsolete ( Eliza Strickland and Mark Harris, Covering Health, AHCJ, 6-2-22) What happens to users of cutting-edge implants when the only company that makes the technology runs out of money? That’s the question we set out to answer during a year-long investigation of the Argus II retinal implant, manufactured by a California company called Second Sight Medical Products. Story also covered by Science Friday (2-25-22) Listen or read transcript, 17 min.)
• Statistical Facts About Blindness in the United States (National Federation of the Blind)
• Going Blind: The Dark Is Closing In (Carle Metzger, Bethesda Magazine, July/Aug.2016) At 26 she learned she had retinitis pigmentosa (RP), an inherited condition that would slowly rob her of her eyesight. An account of what it has been like to slowly see less and less.

• Am I Going Blind? (Frank Bruni, NY Times, 2-23-18) "The affliction that stole my vision, or at least a big chunk of it, did so as I slept. I went to bed seeing the world one way. I woke up seeing it another." Bruni experienced "what is colloquially called “a stroke of the eye,” whereby the optic nerve is ravaged by a brief reduction of blood flow and thus oxygen. The condition, nonarteritic anterior ischemic optic neuropathy (NAION), tends to occur after the age of 50, and typically strikes during sleep, when blood pressure drops, so Bruni learned to "drink plenty of water, especially before bed, because dehydration causes or aggravates blood-pressure dips." ("The most common cause of blindness in one eye is reduced blood flow. The carotid arteries in your neck bring blood to your eyes and brain from your heart. Sometimes plaque (fatty deposits) builds up on the walls of these blood vessels, reducing the amount of blood that can pass through them.")
• One Day, I Couldn’t See Right. My Life Hasn’t Been the Same Since. (Frank Bruni, Opinion, NY Times, 2-15-22) Losing his eyesight helped him see others more clearly. The paradox of his situation made him see that "There’s almost always a discrepancy between how people appear to us and what they’re actually experiencing; between their public gloss and private mess; between their tally of accomplishments — measured in money, rankings, ratings and awards — and a hidden, more consequential accounting."

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• What is AMD (AMDAwareness). Age-related macular degeneration (AMD) is a chronic condition that causes central vision loss. It's a leading cause of blindness in adults 60 and older.
• Macular Degeneration: Timeline of Vision Loss Progression (Sherry Christiansen, VeryWellHealth, 3-21-21)
• The $2 Drug That Millions of Patients Aren’t Being Told About (Kat Kennedy, Elemental, 4-6-21) When University of Arizona professor of ophthalmology, vision science, and physiology Brian McKay discovered that a Parkinson’s medication, levodopa, could effectively treat and prevent AMD, he hoped that this gentler alternative to eyeball injections would be welcomed with open arms by the world of medicine.
• Low Vision Products: Older Adults Explore (Tech-enhanced Life)
• Dry macular degeneration: Coping and support (Mayo Clinic)
• Sight Unseen by Georgina Kleege. Marginally sighted and legally blind at 11 from macular degeneration, Kleege explores the meaning and implications of blindness and sightedness, reminding us that only a fraction of blind people see nothing at all.
• Regenerative Outcomes Foundation Doug Oliver lost his vision in his 40s and was blind for 11 years before stem cell surgery restored his vision in 2015. He started his advocacy foundation to help other blind people who are trying to navigate the bureaucracy of clinical trials. His own surgery was part of an NIH-registered experimental program. (H/T Kathy Schultz) But:
• Miracle cures or modern quackery? Stem cell clinics multiply, with heartbreaking results for some patients. (Laurie McGinley and William Wan, Wash Post, 4-29-18) Hundreds of clinics offering stem cell treatments 'have popped up across the country, many offering treatments for conditions from Parkinson’s disease to autism to multiple sclerosis. Federal regulators have not approved any of their treatments, and critics call such clinics modern-day snake-oil salesmen. But on that day in 2016, Tyler trusted the clinic to extract stem cells from her fat and inject them into her eyes, where she was told they could halt or even cure the macular degeneration threatening her sight....Within months, she said, she was completely blind.... bringing such treatments — tested and refined in rigorous trials — safely to market will take years, experts say...Only a few stem cell therapies have been approved by the FDA, primarily products made from placental and umbilical cord blood and used to treat leukemia and other blood diseases.'

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• Cataracts: A curable condition that causes blindness (TedEd) An estimated 20 million cases of blindness worldwide are caused by cataracts, a curable condition affecting the lens that focuses images onto the eye’s retina. But how are cataracts formed, and how can we prevent them? Andrew Bastawrous gives the facts on cataracts.

• Cataract surgery (NIH SeniorHealth videos)
• Get Your Damned Cataracts Removed Already (Erica Manfred, Snarky Senior, 10-16-21) No, they don’t have to be “ripe.”

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• FDA holds hearings on stem cell research (Kathy Jean Schultz, Center for Health Journalism, 9-5-16) Stem cell research is still experimental but there have been promising results. Schultz provides an update on where things stand and what the issues are.
• Patients Lose Sight After Stem Cells Are Injected Into Their Eyes (Denise Grady, NY Times, 3-15-17) Three cases expose gaps in the ability of government health agencies to protect consumers from unproven treatments offered by entrepreneurs who promote the supposed healing power of stem cells. Legitimate research rarely, if ever, charges patients to participate, scientists say, so the fees should have been a red flag. But many people do not know that. Researchers and health officials have been warning for years that patients are at risk from hundreds of private clinics that have sprung up around the United States and overseas, offering stem-cell treatments for all manner of ailments, like injured knees, damaged spinal discs, neurological diseases and heart failure. Businesses promising “regenerative medicine” have multiplied, with little or no regulation.

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• National Association for the Advancement of Color-Blind People (NAACBP)
• Testing colorvision (ColorDx)
• New Outlook on Colorblindness (Melinda Beck, WSJ, 9-6-12--includes online test for colorblindness) Phone Apps, Videogames Offer Color Help; Seeking a Cure Through Gene Therapy
• "So What's It Like Being Colorblind?" (WSJ, 11-6-12)

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• What Is Sleep Crust? (American Academy of Ophthalmology) Call it sleep crust, eye gunk, eye goop or something else, it is generally harmless. But "One condition that causes crusty eyes during waking hours is blepharitis, a common problem affecting the eyelid at the base of your eyelashes. Another common condition, dry eye, can make your eyes watery or sticky with stringy mucus."
• Resources for finding service dogs, therapy dogs, and other types of assistance dogs (Pat McNees, 6-12-16)
• Guide dog leads vision-challenged professor to new insight (Lane DeGregory, Tampa Bay Times, 10-3-13). A vision-challenged professor loosens a sure grip on what she knows only to gain new insight, thanks to a perfect match with a guide dog. A moving and informative story. Grab a hankie.

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BOOKS ABOUT BLINDNESS AND VISION PROBLEMS AND DISORDERS
• 'New York Times' writer Frank Bruni on what losing eyesight taught him about life NPR's Ari Shapiro speaks with him about his book The Beauty of Dusk: On Vision Lost and Found Bruni (@FrankBruni) writes about the "sandwich board theory," by which if every one of us, was wearing something that told you what we had struggled with in the past or were struggling with now, we would all understand how many people are struggling in some way, would be less inclined to self-pity, and develop more empathy "that ideally we would always all show one another." A book about his and others' experiences bringing growth.
• Planet of the Blind by Stephen Kuusisto. Blind in one eye and nearly blind in the other, at his mother's urging he feigns sightedness until coming to terms with his condition. The sequel: Eavesdropping: A Memoir of Blindness and Listening (in this sequel to Planet of the Blind, in which the author learns to live by ear.
• Rex: A Mother, Her Autistic Child, and the Music that Transformed Their Lives by Cathleen Lewis. The moving story of a mother and her child, a boy who is blind, autistic, and a musical savant.
• Loving Rachel by Jane Bernstein. About life with a blind daughter.
• Touching the Rock: An Experience of Blindness by John Hull. From sight problems at 13, gradually becoming blind.
• Crashing Through: The Extraordinary True Story of the Man Who Dared to See (Robert Kurzon's book about Mike May. Blinded at age three, May defied expectations by breaking world records in downhill speed skiing, joining the CIA, and becoming a successful inventor, entrepreneur, and family man. He never yearned for vision. Then in 1999 he was given a chance to see again. The results were fascinating and unexpected and this book is interesting whether you have vision problems or not!

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The Beneficial Effects of Life Story and Legacy Activities by Pat McNees (Journal of Geriatric Care Management, Spring 2009). Get PDF file of journal article here (61.9KB)

The boy in the plastic bubble (by Pat McNees)

Diabetes

(and the high price of insulin)

Insulin is an essential hormone. It helps your body turn food into energy and manages your blood sugar levels. If you have diabetes, your body can't make enough insulin or can't use it properly.There are many blogs and websites about diabetes, and support groups that provide opportunities to connect with others with diabetes and to ask questions, exchange advice, and so on.
• Many People Living in the ‘Diabetes Belt’ Are Plagued With Medical Debt (Robert Benincasa, NPR and Nick McMillan, NPR, 5-30-23) The “Diabetes Belt,” as defined by the Centers for Disease Control and Prevention, comprises 644 mostly Southern counties where diabetes rates are high. Of those counties, KFF Health News and NPR found, more than half also have high levels of medical debt.
• The Facts About the $35 Insulin Copay Cap in Medicare (Juliette Cubanski and Tricia Neuman, KFF, 6-12-24) In a recent post on his social media platform, Donald Trump claimed credit for lowering insulin copayments to $35 for “millions of Americans,” stating – inaccurately – that President Biden had “nothing to do with it.” While Trump claimed that he extended lower insulin pricing to “millions of Americans,” CMS estimates that around 800,000 insulin users had access to $35 insulin copays under the Part D Senior Savings Model in 2022. In contrast, the $35 copay cap under President Biden’s Inflation Reduction Act provision is available to all insulin users enrolled in all Medicare Part D plans – an estimated 3.3 million in 2020, based on KFF estimates.
• I Should Be Able To Treat Obesity The Same Way In East L.A. And Beverly Hills (Anne L. Peters, Los Angeles Times, 10-29-24) "As a diabetes specialist, I’ve treated thousands of patients, some in Beverly Hills and some in East Los Angeles. My Beverly Hills patients live to become healthy 80- and 90-year-olds. I can’t remember when my last patient from this community lost their vision, had an amputation or started dialysis. Almost none have heart attacks or strokes. But in under-resourced parts of East L.A. I see people every week in their 40s and 50s who have developed life-altering, preventable diabetes complications — blindness, kidney failure, the loss of a limb. These patients rarely live to grow old."
• Many Privately Insured People with Diabetes Could Save Money if Congress Caps Insulin Costs Several legislative proposals in Congress propose a $35 per month cap on what people with health insurance would have to pay out of pocket for insulin, a life-saving hormone taken regularly by many people with diabetes to maintain their health. Such a cap could provide financial relief to at least 1 out of 5 insulin users with different types of private health insurance, a new KFF analysis of insurance claims data finds. Among people with private insurance who currently pay more than $35 per month for insulin on average, half would save at least $19 per month, and a quarter would save at least $42 per month. Savings are highest among people who buy their own insurance.

• Wait, Is Insulin Cheaper Now? (Dan Weissmann, An Arm and a Leg, KFF Health News, 2-28-24) Pharmaceutical companies that manufacture insulin made headlines last year when they voluntarily agreed to provide discount cards that lower the monthly cost of insulin for many people to $35 (if they are on Medicare). It's $70 sometimes if you use 2 types of insulin at once. But getting your hands on this card — and persuading a pharmacist to accept it — can be a hassle.

And the Big Three ( the American company Eli Lilly, the Danish company Novo Nordisk, and the French company Sanofi) didn’t lower the price of every type of insulin, only ones that have been around since the 1990s or early 2000s. Newer insulins that work faster or last longer are not included here. Skim down for more on the price of insulin.
• Mutual Aid Diabetes, a volunteer community-based resource hub to help diabetics get what they need, when they need it. They help people with cash and with free diabetes supplies, including insulin, no questions asked. For diabetics of all types, including members of the diabetes community who are (but not limited to) Black, Indigenous, Latinx, trans, type 2, LADA, MODY, type 3C, CFRD, fat, incarcerated, immigrants, un/under-documented, and who have co-occurring disabilities.
• A Complete List of Diabetes Medications (Healthline, 4-5-24) Doctors prescribe different medications to treat type 1 and type 2 diabetes and help control your blood sugar. Many medications are available to treat type 1 and type 2 diabetes. They each work in different ways to help control your blood sugar. Ask a doctor which diabetes drug may be the best fit for you. They can make recommendations based on the type of diabetes you have, your health, and other factors. It’s important to know that new medications for diabetes are constantly being investigated for approval. Treatment may vary depending on your diagnosis, health, and other factors. People with type 1 or type 2 diabetes often need to take other medications to treat conditions that are common with diabetes.
• Sanofi’s Lantus Insulin to Sell for $35 Via GoodRx Site (Cailley LaPara and John TozziBloomberg, 10-19-23)
• Getting Under the Skin (McKenzie Prillaman, Grow By Ginko, Amid an insulin crisis, one project aims to engineer microscopic insulin pumps out of a skin bacterium.Restoring the body’s insulin production—through microbes or other means—is on the horizon. And the bacterial insulin pump project is a novel twist even in the emerging field of engineered bacterial therapeutics.
• California Plans to Lower Insulin Prices by Making Its Own (Alyssa Hui, VeryWellHealth, 7-13-22) It’s unclear exactly how much insulin will cost through California’s new program or when the drug will be available for purchase. Experts say it costs less than $10 to manufacture and produce one vial of insulin, but typical out-of-pocket costs for insulin can range anywhere from $40 to $400.
Insulin is a hormone produced in the pancreas that helps people control and regulate the amount of glucose or sugar in the bloodstream. People with type 1 diabetes can’t produce insulin, and those with type 2 diabetes either can’t produce enough insulin or don’t respond well to it.

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• Eli Lilly Says It Will Cut the Price of Insulin (Rebecca Robbins, NY Times, 3-1-23) Eli Lilly and Company said it would significantly reduce the prices of several of its lifesaving insulin products used by diabetes patients and whose prices Lilly has repeatedly increased in the past. And already caps at $35 a month what patients pay out of their own pockets for the company’s insulin. The lower list prices, which will take effect over the course of 2023, apply only to the company’s older insulin products. And a large percentage of diabetes patients who need insulin take products made by two other major drug manufacturers, Sanofi and Novo Nordisk. Lilly’s changes would be helpful for diabetes patients who are uninsured or underinsured.
       But Claire Bugos, in Who Will Benefit from Eli Lilly's Insulin Price Cuts? (VeryWellHealth, 3-2-23) writes: "With Lilly's price cuts, people with private insurance are the most likely to benefit from the out-of-pocket payment caps. However, not everyone's out-of-pocket costs will go down—those with comprehensive commercial insurance plans may already spend less than $35 per prescription on their insulin. People with high deductible health plans are more likely to see a reduction in their insulin cost burden before they hit their deductible.
     "People with diabetes who are uninsured can receive insulin for $35 per month through Lilly’s existing savings program. But that benefit is a drop in the bucket for the overall cost of diabetes care for uninsured people, said Anna Sinaiko, PhD, assistant professor of health economics and policy at the Harvard School of Public Health.
      “There are a lot of barriers to getting care when you're uninsured,” Sinaiko told Verywell. “When you first have diabetes, you need to be seen by a physician and have related health care services, and then you would get a prescription. This isn't going to get rid of those cost barriers related to getting initial care for your diabetes.”

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• Armed With Hashtags, These Activists Made Insulin Prices a Presidential Talking Point (Bram Sable-Smith, KHN, 2-15-23) Insulin has become increasingly expensive. One version rose in price from $21 to $255 per vial between 1996 and 2016.

A small group of patient activists have managed to turn U.S. insulin prices into a kitchen table issue in part through their use of Twitter. And 22 states and Washington, D.C., have now passed caps on insurance copayments. Activists have long called for caps on insulin prices, not just copays, and Biden’s call for capping out-of-pocket insulin costs for all Americans. is unlikely to gain traction in the current Congress, let alone address the broader concerns about the high prices of many other types of medications that patients struggle to afford. Some advocates now say they have scaled back their use of Twitter, as trolls grow bolder with Elon Musk now in charge of Twitter and journalists and politicians eyeing other platforms.
Many prominent voices on what some call Diabetes Twitter have a personal connection to high insulin prices, having struggled to afford it themselves or had family members die because of rationing. The hashtag #insulin4all was created in part by T1 International,a nonprofit that advocates for people with Type 1 diabetes and doesn’t take donations from pharmaceutical companies. Nicole Smith-Holt became an insulin activist after she lost her son Alec, at age 26, in 2017 because he couldn’t afford his insulin. She was among a group of activists who traveled to Canada in 2019 to purchase insulin over the counter to showcase the disproportionately high cost Americans pay. Since the #insulin4all campaign started, all three major insulin manufacturers have new patient assistance programs to help people get insulin if they are struggling to afford it. Another offline success came in 2020 in Minnesota, where Smith-Holt championed the Alec Smith Insulin Affordability Act, which created an insulin safety net that made insulin available for as little as $35 for a 30-day supply to people with an urgent need.
• The good news: As of January 1, 2023, the out-of-pocket cost of insulin for Medicare recipients is capped at $35 a month.

"In both type 1 and type 2 diabetes, blood sugar levels can get too high because the body doesn't produce insulin (a hormone that regulates blood sugar)—or it does not utilize insulin properly. Though the problem is essentially the same in both types, they have different causes and treatments. Type 1 diabetes is a genetic disorder that typically shows up early in life, and type 2 diabetes is developed over time, largely due to diet and lifestyle choices. In both cases, your body does not produce enough insulin to properly regulate your blood sugar, but for different reasons. If you're exhibiting symptoms, you can get tested for diabetes with an A1C screening, which measures your blood sugar for the past 2-3 months.
~Life Line Screening

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• F.D.A. Approves a Drug That Can Delay Type 1 Diabetes (Gina Kolata, NY Times, 11-18-22) The drug, marketed as Tzield, does not cure or prevent diabetes, but delays its onset by an average of two years and, for some patients, much longer. The therapy will cost nearly $200,000. But it’s the first treatment in 100 years to alter the course of the disease, which usually begins in adolescence.
• Medical Care Alone Won’t Halt the Spread of Diabetes, Scientists Say (Roni Caryn Rabin, NY Times, 10-5-22) Now experts are calling for walkable communities, improved housing, and access to health care and better food, particularly in minority communities. A comprehensive national report to Congress on diabetes calls for reframing the epidemic as a social, economic and environmental problem, and offers a series of detailed fixes, ranging from improving access to healthy food and clean water to rethinking the designs of communities, housing and transportation networks.
• Covid and Diabetes, Colliding in a Public Health Train Wreck (Andrew Jacobs, NY Times, 10-5-22) Several studies suggest that 30 to 40 percent of all coronavirus deaths in the United States have occurred among people with diabetes. People with poorly controlled diabetes are especially vulnerable to severe illness from Covid, partly because diabetes impairs the immune system but also because those with the disease often struggle with high blood pressure, obesity and other underlying medical conditions that can seriously worsen a coronavirus infection.
• A Cure for Type 1 Diabetes? For One Man, It Seems to Have Worked. (Gina Kolata, NY Times, 11-27-21) A new treatment using stem cells that produce insulin has surprised experts and given them hope for the 1.5 million Americans living with the disease. People with poorly controlled diabetes are especially vulnerable to severe illness from Covid, partly because diabetes impairs the immune system but also because those with the disease often struggle with high blood pressure, obesity and other underlying medical conditions that can seriously worsen a coronavirus infection.

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• FDA approves Lilly diabetes drug that analysts expect to be a big seller (Matthew Herper, STAT, 5-13-22) FDA approved Mounjaro, a new injection for type 2 diabetes made by Eli Lilly that lowers blood sugar and can help patients lose weight. In clinical trials Mounjaro was more effective than other treatments studied.
• 1 In 6 People With Insulin-Dependent Diabetes Forced To Ration Their Doses (KHN Morning Briefing, 10-16-22) Startling statistics about Americans with diabetes: About 1.3 million people are not taking their full prescribed doses of insulin because it costs too much.
• Checking Up on California’s DIY Insulin Project (Dan Weissmann, An Arm and a Leg podcast, 10-13-22) Listen or read transcript. Emily: "A vial of insulin – which for me lasts about 10 days – is about $300. --Which is five times more than it was in 2007. That’s how we’ve ended up in a situation where an estimated 1 in 4 people who need insulin in the U.S., ration it." The price of insulin could be the starkest example of an out-of-control health care system: More than 7 million Americans need it daily to survive, and some die because they can’t afford it. Big Pharma fights regulation of drug prices. But insulin has been around for 100 years, a medicine its discoverers didn’t want to patent.

This year [2022], the state of California put up $100 million to begin manufacturing its own insulin and sell it cheaply. The biggest hurdle: Pharmacy benefit managers. "They’re middleman companies that basically decide which drugs your insurance plan will cover. They’re super-powerful, partly because there’s only three big PBMs. In theory, they’re negotiating with pharma companies to get discounts. In reality, they’re skimming a ton for themselves. So, the higher a drug’s list price is, the more there is for the PBM to skim."

CalRx's plan involves trying to bypass the PBMs, negotiating directly with insurance companies. And selling directly to patients. CalRx's goal isn't to make a lot of money but to get insulin prices a lot lower. A group of "mothers in anguish, protested outside a Cambridge drug company today....They got together with activists around the country to protest in front of the headquarters of Eli Lilly, Novo Nordisk, and Sanofi, the three giant pharmaceutical companies who make and set the price for insulin."

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• What I need to know about Diabetes Medicines (PDF, National Institute of Diabetes and Digestive and Kidney Diseases, or NIDDK) This is a long document packed with useful information about all the medications useful for diabetes control, not just insulin.
• House Passes Bill to Limit Cost of Insulin to $35 a Month (Margot Sanger-Katz, NY Times, 3-31-22) To become law, the bill will need to attract at least 10 Republican votes in the Senate to overcome a filibuster. Some lawmakers involved in the effort have expressed optimism that such a coalition might be possible, but few Republican senators have publicly endorsed the bill yet. Senator Susan Collins, Republican of Maine, has been working with Senator Jeanne Shaheen, Democrat of New Hampshire, on a broader bill related to insulin prices.
The pharmaceutical industry opposed the drug price regulations in the social spending and climate legislation, but it has not vocally opposed the insulin bill. While the bill would lower costs for many individual patients who take insulin, it would do nothing to reduce the prices paid to the companies that make it. Instead, insurance companies would simply pay a larger share of the price.

People with poorly controlled diabetes are especially vulnerable to severe illness from Covid, partly because diabetes impairs the immune system but also because those with the disease often struggle with high blood pressure, obesity and other underlying medical conditions that can seriously worsen a coronavirus infection.

• Why So Slow? Legislators Take on Insurers’ Delays in Approving Prescribed Treatments (Michelle Andrews, KHN,5-17-22) Insurers say prior authorization requirements are intended to reduce wasteful and inappropriate health care spending. But getting that approval can take as many as three weeks, and patients sometimes run out of insulin before it comes through. Doctors say that insurers have yet to follow through on commitments to improve the process.

House Passes Bill To Lower Insulin Costs, But Prospects Unclear In Senate (Los Angeles Times, 3-31-22) The House moved Thursday to revive one of the more popular provisions of last year’s failed social safety net package, passing a narrow healthcare bill that would dramatically lower out-of-pocket costs for insulin users. The bill passed by a vote of 232 to 193, with 12 House Republicans joining all Democrats in support. The measure would cap insulin costs at $35 a month for consumers enrolled in private health insurance plans or Medicare. Currently, based on the patient’s condition and choice of treatments, costs can range from $334 to $1,000 a month for insulin, according to a 2020 Kaiser Family Foundation report.

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• Why limiting insulin out-of-pocket costs solves only part of the problem (Joseph Burns, Covering Health, AHCJ, 3-30-22) Any limit on what patients pay out of pocket for insulin would not address the underlying excessive price of insulin in the U.S. (The average gross manufacturer price for a standard unit of insulin in 2018 was $98.70 in the U.S., more than 10 times higher than the $8.81 price of a standard unit of insulin in 32 other countries. The insulin provisions in Build Back Better (BBB) and other laws Congress is considering would limit only what diabetes patients who have health insurance pay each month for insulin. A per-month cap of $35 on out-of-pocket costs for insulin could produce substantial savings for patients with diabetes who need insulin.
•Colorado becomes first state in nation to cap price of insulin (Anna Staver, Denver Post, 5-23-19) Under bill signed by governor this week, diabetics will pay no more than $100 a month for insulin....Insulin has been around for nearly a century, but the price that patients with Type 1 and Type 2 diabetes pay for the drug has doubled since 2012...The cost of insulin can creep up toward $1,000 for those whose health care coverage requires significant cost-sharing." The new law also requires the state attorney general to investigate why drug manufacturers started rapidly raising the price of insulin in recent years, and to report by 2020.

'
• Prediabetes has more than doubled among American children. Here's how to reduce your kids' risk (Madeline Holcombe, CNN, 3-28-22) The increase was seen over almost all subpopulations of young Americans, regardless of income, ethnicity and education. From 1999 to 2018, the rate of prediabetes in adolescents went from 11.6% to 28.2%, rising fairly steadily in that time frame. You can start reducing your kids' prediabetes risk by encouraging a healthy lifestyle.
• Out of Control: America’s losing battle against diabetes (Reuters series)
---The Pandemic Effect (1.Chad DTerhune, Robin Respaut, and Deborah J. Nelson, Reuters,8-12-21) The coronavirus pummeled Americans who have diabetes because when the pandemic hit, the nation was already fighting a losing battle against the chronic disease.
---2. Lower Isn’t Always Better (11-4-21) Drugmakers promoted a treatment target they helped create – an A1c below 7% – and as their sales of diabetes drugs soared, so did potentially lethal incidents of low blood sugar.
---3. Keeping Quiet (12-8-21) J&J staked its claim in the vast market for type 2 diabetes treatments with Invokana, then kept quiet as it received reports of a dangerous complication in people who took the drug
---4.Eat Your Medicine (12-22-21) Across the United States, a small but growing number of small local programs are providing healthy food and the skills to prepare it to help type 2 diabetes patients manage their disease and reduce their reliance on expensive medications. Early signs are encouraging.

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• Diabetes-Friendly Snacks With 200 Calories or Less ( Barbie Cervoni, Very Well Health) If timed carefully, a between-meal nosh can help steady blood sugar levels, prevent them from dropping, and fend off food cravings.
• They Were the Pandemic’s Perfect Victims (Duaa Eldeib, ProPublica, 12-28-21) The pandemic killed so many dialysis patients that their total number shrunk for the first time in nearly half a century. Few people took notice.
• Financial Assistance Resources for Individuals With Diabetes(Fiscal Tiger) Invaluable. Scroll down through cost of care, health insurance coverage, government-funded insurance programs, varous assistance programs (patient assistance, free diabetic supplies, money-saving programs such as RX Assist, clinical studies, crowdfunding and medical fundraising, and help for college students with diabetes).
• Readers and Tweeters Give Tips on Treating Diabetes and Long Covid (Letters to the Editor, KHN, 4-12-21) Partly a response to ‘Painless’ Glucose Monitors Pushed Despite Little Evidence They Help Most Diabetes Patients (Phil Galewitz, KHN, 3-16-21) Links also to Children’s Hospitals Grapple With Young Covid ‘Long Haulers’ (Carmen Heredia Rodriguez, KHN, 3-3-21)
• I Write About America’s Absurd Health Care System. Then I Got Caught Up in It. (Bram Sable-Smith, KHN, 1-25-22) The insurance industry defends "prior authorization" as protecting patient safety and saving money. It feels like a lot of paperwork to confirm something we already know: Without insulin, I will die. The time wasted by me, the pharmacists, the nurses and probably some insurance functionaries is astounding and likely both a cause and a symptom of the high cost of medical care. The problem is also much bigger than that.

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• Dialysis Industry Spends Millions, Emerges as Power Player in California Politics (Samantha Young, KHN, 12-10-2020) The two giants of the dialysis industry, DaVita and Fresenius Medical Care North America, have spent about $212 million over the past four years to influence California’s voters and politicians, out of a total $233 million in industry giving. Most of the money funded the defeat of two union-backed ballot measures that would have regulated dialysis clinics — and eaten into their profits.
• The Full Story of Insulin and Its Cost ― No Sugarcoating It ( Dan Weissmann, An Arm and a Leg podcast, KHN, 7-10-19) One out of every 4 people with Type 1 and 2 diabetes rations insulin. In an unconventional lab space in present-day Oakland, Calif., amateur researchers are working on a 21st-century recipe for affordable insulin.
• Facebook post on insulin: In 1923 Frederick Banting & Charles Best won the Nobel Prize for the discovery of insulin. They decided to give away the patent for free because they wanted insulin to be available to diabetics at no charge. When Banting and Best turned over the patient for production, they agreed to receive only $1 each in compensation. Since then drug companies monopolized the insulin market and now charge diabetics $500 a month to survive. (Of course, the drugs have been refined.) For more articles about Insulin pricing, see Fighting drug price gouging and making drugs more affordable.

• Trump's tweet Mostly False. (PolitiFact, 7-25-2020) Trump tweeted: Under an executive order, “expensive insulin went from big dollars to virtual pennies … especially (for) our seniors."

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"It’s important to note that with prescription drugs, the price isn’t the price. There’s a list price, but what someone actually pays depends on drug maker discounts and rebates given to drug distribution intermediaries, a person’s insurance plan (if they have one) and where they stand with their deductibles and copays....His executive order touched less than 20% of the clinics that might provide insulin through a key government drug discount program. That drug program itself represents perhaps 10% of the total prescription drug market."
• Revisiting Insulin: How the Medicine Got So Expensive (transcript, Am Arm and a Leg, 2-25-21, update of a show in 2019). Or listen to audio version. How insulin got discovered, how it got to be so expensive, and three ways people who NEED insulin have mobilized for self-defense against insulin’s horrible U.S. prices. The science has advanced greatly, but the big drug manufacturers maintain a lockhold on production by getting patents on the active ingredient, its medical uses, drug delivery devices, etc.--and hence prices. Since 2015, volunteer researchers at the Open Insulin Project in Oakland (run out of "target="_blank">Counter Culture Labs) have been working on a recipe for insulin, with the goal of sharing that recipe widely--and addressing the problem of profit-driven medicine.
The Open Insulin Foundation (especially Anthony DiFranco) is working to develop the first practical, small-scale, community-centered model for insulin production to make insulin accessible to all--with the goal of having local sources of safe, affordable, high-quality insulin, so people living with diabetes and their communities can own and govern the organizations that produce the medicine they depend on to survive. (In a recent year, Eli Lilly took in about $3 billion on insulin. "We need rogue cowboy hackers to combat-- or at least complement-- the Eli Lillys of the world.")

Terri Lyman, a Type 1 diabetic in Arizona, a "rogue cowboy hacker, with an open-source insulin rig," has hacked together an artificial pancreas. "They’ve been talking with regulators and with legislators about how open-source insulin could be LEGALLY distributed." Anatomy of a 97,000% drug price hike: One family's fight to save their son (Wayne Drash, CNN, 6-29-18) At 7 months, Trevor was diagnosed with infantile spasms, a rare and catastrophic form of epilepsy. The diagnosis was devastating, forcing the family to cancel an overseas move and fight for their son's life. It also thrust them into the unregulated world of America's drug prices. Trevor's doctors said he needed a "miracle drug" known as Acthar. But between Trevor's birth and diagnosis, the price of the drug had shot up from $1,600 a vial to more than $23,000 a vial -- making him one of the first children caught up in one of medicine's most controversial price hikes. Trevor would need at least five vials....Questcor Pharmaceuticals had paid a mere $100,000 for the rights to the drug in 2001. The company first raised the price from $40 to $750 a vial shortly after acquiring it. The price doubled over the next few years. Then, on August 27, 2007, the price shot up overnight from $1,600 to $23,000 a vial. The hike was so dramatic that the Epilepsy Foundation, the American Epilepsy Society, the American Academy of Neurology and the National Association of Epilepsy Centers fired off a letter demanding answers.

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• T1International, frequently asked questions from a group with a similar goal of making insulin available to everyone who needs it.
•What the Trump Home Dialysis Plan Would Really Look Like (Judith Graham, WaPo, 8-16-19) It takes more than an executive order to shift kidney disease patients from dialysis centers to home care. These patients show it takes discipline, skill, will and support. ' "The training was “rigorous” and “pretty scary for both of us,” said Letisha Wadsworth, now 70, whose husband, Damon, accompanied her. “We learned a lot about dialysis, but we still didn’t know about issues that could arise when we got home.” Issues that Wadsworth has had to deal with: learning what to do if air got into one of the lines. Adjusting the rate at which her blood was pumped and flowed through the machine. And, recently, getting a medical procedure to fix the access site for her needles, which had clotted with blood. Another issue: finding space for 30 large boxes of supplies (fluids, filters, needles, syringes and more) that Wadsworth orders each month. They’re stored in two rooms in her house. Home hemodialysis requires one to two months of education and training for both the patient and, usually, a care partner.'
• Long-term complications of diabetes (MedlinePlus). You must read this if you have diabetes. See also Diabetes-Related Conditions (WebMD)
• He lost his insurance and turned to a cheaper form of insulin. It was a fatal decision. (Antonio Olivo, Washington Post, 8-3-19) The more affordable form of insulin — sold by Walmart since 2000 under its ReliOn brand — is known as “human insulin.” It predates the genetically altered “analogue” insulin doctors routinely prescribe. While human insulin can require as many as four hours to take effect, with varying levels of success, analogue insulin is more precise and takes as little as 20 minutes to regulate blood sugar levels, patient advocates say. But with analogue insulin prices nearly tripling since 2002, doctors have begun recommending the cheaper version as a stopgap. Human insulin may work better for people who have Type 2 diabetes, the form of the disease that develops more often in people who are overweight or obese and that is more manageable with diet and exercise. For the estimated 1.25 million people with Type 1 diabetes in the United States, using human insulin is riskier. Their bodies typically are unable to produce any natural insulin, leaving them more vulnerable to fluctuations in blood sugar levels without careful monitoring. “The high cost of insulin is a concern for those trying to manage their diabetes, and human insulin can be a less expensive alternative, but it may not be right for everyone,” said a Walmart spokeswoman. For the 26-year-old featured in this story, who was trying to save money for his wedding by taking the cheaper version, it clearly didn't work.
• ‘We’re Fighting For Our Lives’: Patients Protest Sky-High Insulin Prices (Bram Sable-Smith, NPR, Kaiser Health News, 12-12-18) The cost of insulin nearly tripled from 2002 to 2013, and has doubled again since then. The list price is over $300 for a single vial of medicine, and most people with Type 1 diabetes need multiple vials every month to live. That cost is typically lower with insurance or with discount programs. Still, for some people the price is unmanageable, and consumer activists have begun putting pressure on the three main companies that make insulin in the U.S. (Sanofi-Aventis, Novo Nordisk, Inc., and Eli Lilly and Co.) to reduce prices.

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• Why Should Americans Be Grateful for $137 Insulin? Germans Get It for $55 (Elisabeth Rosenthal, NY Times, 3-21-19) This month, Eli Lilly and Company announced with some fanfare that it was manufacturing a generic version of its own best-selling insulin brand, Humalog, which it would sell for half off — $137.50 versus $275. Only by the bizarre logic of the U.S. pharmaceutical industry does this drug count as any kind of generic.
• Lilly discloses pricing data on insulin in response to political pressure (Ed Silverman, STAT+, 3-24-19) Under pressure over its pricing of insulin, Eli Lilly (LLY) on Sunday issued a report in which it claims that the price it was paid for a key diabetes treatment fell by 8.1 percent over the past five years, after subtracting rebates and other discounts. Specifically, the net price for Humalog, after accounting for those givebacks, was $135 a patient per month last year, down from $147 in 2014. Meanwhile, the average list — or wholesale — price during that same period increased 51.9 percent to $594 per patient each month.
• The insane, surprising history behind insulin’s crazy price (and some hopeful signs in the wild) (An Arm and a Leg podcast, 7-10-19) To understand insulin's rapidly multiplying price tag, "we went back almost 100 years and dug up a story of sweaty Canadian researchers — swatting away flies and doing business with probable dog-nappers, on the way to a Nobel Prize… and a deal with corporate pharma."
• The Open Insulin Project, a team of Bay Area biohackers working on newer, simpler, less expensive ways to make insulin.
• Life, Death and Insulin (Tiffany Stanley, WaPo Magazine, 1-7-19) As the cost of the lifesaving medication skyrockets, some desperate diabetics are rationing — and risking their lives. Was Alec Raeshawn Smith one of them? The rising prices from Eli Lilly, Sanofi and Novo Nordisk have raised suspicions. The companies appear to have increased them in lockstep over a number of years, prompting allegations of price fixing. All three companies denied these charges. Pharmacy benefit managers (PBMs), which include Express Scripts, OptumRx and CVS Health; all are now named in lawsuits on high insulin prices, but these companies also deny any wrongdoing. “People should not have to pay significant high prices for accessing a treatment that keeps them well,” says economist Rena Conti.
• Dialysis Is a Way of Life for Many Older Patients. Maybe It Shouldn’t Be. (Paula Span, NY Times, 2-15-19) So-called conservative management can ease symptoms without dialysis in some people with kidney disease. But many of them are never given the option. John Everdell had lived most of his life with kidney disease. As a young man awaiting a transplant, he had briefly undergone dialysis. That’s how he knew, when the prospect of kidney failure loomed again in his late 60s, that he would refuse dialysis this round. He followed a careful diet, controlled his blood pressure, avoided weight gain and gave himself hormone injections to ward off anemia. A sister offered her kidney for a third transplant, when needed. Developed as a temporary measure to keep patients with kidney disease alive until they could receive transplants, dialysis instead often becomes a way of life.
• Questionable diabetes treatment that raised hopes now at the center of criminal charges (PBS NewsHour, 6-9-18. Watch/listen or read transcript) A national network of clinics called Trina Health claimed it offers a miraculous procedure to treat diabetes, but many in the medical community were not convinced. Special correspondent Cheryl Clark from inewsource tells the story of a couple in rural Montana who believed in the treatment and even invested in opening their own clinic, before its founder was arrested on federal public corruption charges. See also Hustling Hope: Doctors Debunk Diabetes Treatment As Fraud Charges Hit Clinic Executive (Cheryl Clark / inewsource) and the award-winning series Hustling Hope (Cheryl Clark, Lorie Hearn, Megan Wood, inewsource.org, 2018).

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• Insulin Shock vs. Diabetic Coma (Rod Brouhard, EMT-P, First Aid Phraseology, VeryWell Health, 12-17-18) Trying to make it simple only makes it more complicated.
• Secretive ‘Rebate Trap’ Keeps Generic Drugs For Diabetes And Other Ills Out of Reach (Jay Hancock and Sydney Lupkin, KHN, 1-18-19) In a practice that policy experts say smothers competition and keeps prices high, drug companies routinely make hidden pacts with middlemen that effectively block patients from getting cheaper medicines. The so-called rebate trap joins a long history of efforts by makers of brand-name drugs to stifle generics, including protecting drugs with multiple layers of dubious patents, “pay for delay” deals to keep generics off the market and withholding key ingredients needed for generic production, critics say...Makers of established brands give volume-based rebates to insurers or intermediaries called pharmacy benefit managers. In return, those middlemen often leave competing generics off the menu of drugs they cover, called a formulary, or they jack up the price for patients. The result is that many can’t get the cheaper drugs unless they shoulder a bigger copay or buy them with no help from insurance....In 2015, only 19 percent of generic drugs covered by Medicare were in the preferred formulary tiers with the lowest out-of-pocket costs, found a study last year by consultants Avalere. In 2011, on the other hand, 71 percent of generics had been in the best tier, which helps determine what patients are prescribed.
• As Drug Prices Rise, Is Boston’s Prosperity Based On A Moral Crime? (Dr. Vikas Saini, CommonHealth, WBUR, 1-31-19) "The pharma sector, the pride of Massachusetts, is a bubble fed by astronomical, obscene profits. It’s not the innovative ideas, though there are many of those, nor the “best and the brightest” young scientists, though they can be dazzling in their smarts, that are making the biotech sector boom. It’s the recent access to cheap capital and even cheaper hype. And predatory pricing. The companies that have put down roots here to take advantage of our educated elite – Sanofi, Eli Lilly, Novartis and scores of others – have continued the pattern made famous by Martin Shkreli, the CEO who dramatically hiked the price of several drugs, and is now serving jail time for defrauding investors. Companies today are setting prices to whatever the market will bear, no matter the damage...what kind of economic miracle routinely depends on the FDA to approve cancer drugs that are unproven when it comes to prolonging life, yet cost more than $100,000 for a course of treatment? What kind of economic miracle leads to people dying because they can’t afford an essential medicine like insulin, which has been around for almost a century? Antavia Lee Worsham, Alec Raeshawn Smith, Shane Boyle and Jesse Lutgen, four people with type 1 diabetes, died because they couldn't afford insulin."
• House Dems fire first salvo in drug pricing fight (Nathaniel Weixel, The Hill, 1-16-19) House Democrats this week fired a shot across the bow of the nation’s pharmaceutical companies as they begin a long-anticipated effort to cut down on high drug prices. The House Oversight and Reform Committee launched a sweeping investigation into how the industry sets its prices, in what is being seen as one of the broadest drug pricing investigations in decades. Committee Chairman Elijah Cummings (D-Md.) sent letters to a dozen different companies seeking detailed
information and documents about how the companies price their medications. In his sights are some of the largest branded drug companies, as well as the three primary insulin manufacturers in the world.
• Ad Check: What Happens If California Limits Dialysis Center Profits? (Harriet Rowan, KHN, 11-2-18) Here’s what both sides had to say and what they base it on.
• Diabetes (NIDDK) "Diabetes is a disease that occurs when your blood glucose, also called blood sugar, is too high. Over time, having too much glucose in your blood can cause health problems, such as heart disease, nerve damage, eye problems, and kidney disease. You can take steps to prevent diabetes or manage it. An estimated 30.3 million people in the United States, or 9.4 percent of the population, have diabetes. About one in four people with diabetes don’t know they have the disease. An estimated 84.1 million Americans aged 18 years or older have prediabetes."
• Glucose Changes in Type 1 Diabetes May Affect Thinking Speed (Kristen Monaco, MedPage Today, 3-19-24) In type 1 diabetes, glucose fluctuations were linked with cognitive processing speed, but not sustained attention, researchers reported."We don't think that large glucose fluctuations are healthy for the body, but our results additionally suggest that when your glucose is much different from what your body is used to, you might find that your thinking is slower or more sluggish," explained co-author Laura Germine, PhD, of the McLean Institute for Technology in Psychiatry."Maintaining stable glucose is important for overall health and will likely result in more stable cognitive function as well from hour to hour and day to day."

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• Cardiovascular Prevention Guidelines Call for Less Aspirin, More SGLT2s, GLP-1s for Type 2 Diabetes (Mary Caffrey. American Journal of Managed Care, 3-17-19) eaders from the American College of Cardiology (ACC) and the American Heart Association (AHA) on Sunday released updated primary prevention guidelines that envision fewer people taking aspirin, but potentially more with type 2 diabetes (T2D) taking new medications that lower blood sugar.
• American Diabetes Association (ADA, many resources--also available in Spanish)
• Joslin Diabetes Center (known for deep expertise in diabetes treatment and research)
• Ask Your Questions (Diabetes Action Research and Education Foundation)
• Children with Diabetes (online community for kids, families and adults with diabetes)
• Diabetes Prevention That Works (Paula Span, NY Times, 12-26-14) See especially Diabetes Prevention Program (NIDDK)
• Ad Check: What Happens If California Limits Dialysis Center Profits? (Harriet Rowan, KHN, 11-2-18) Here’s what both sides had to say and what they base it on.
• The Risky Game One Doctor Plays To Help Patients Find Affordable Insulin (Martha Bebinger, Commonhealth, WBUR, 4-19-18) "There are several websites that list the cash prices for insulin and hundreds of other drugs. But most of [Dr. Hayward] Zwerling's patients have health insurance, and each health plan varies. When Zwerling meets with patients, he can't tell what the copay will be for each drug. He doesn't know if the patient has met their deductible. Those on Medicare may be in the so-called doughnut hole. The brands of insulin Zwerling prescribes are covered by some plans, with varying costs for members, and not others. And the negotiated price for each drug may be different from insurer to insurer and pharmacy to pharmacy....There are some remedies in the works. CVS Health has just rolled out a program that lets pharmacists show patients the cost of a prescription before they fill it, as well as cheaper options....Massachusetts is, in theory, ahead of many states because doctors, hospitals and insurers are required to help patients find the price of services. But that requirement does not apply to pharmacies or prescriptions, and there's no move to amend the law. That's disappointing to some consumer advocates."
• Insulin's High Cost Leads To Lethal Rationing (Bram Sable-Smith, NPR, Shots, 9-1-18) Insulin is an unlikely symbol of America's problem with rising prescription costs. Diabetic ketoacidosis is a terrible way to die. It's what happens when you don't have enough insulin. Your blood sugar gets so high that your blood becomes highly acidic, your cells dehydrate and your body stops functioning. Diabetic ketoacidosis is how Nicole Smith-Holt lost her son. Three days before his payday. Because he couldn't afford his insulin....The price of insulin in the U.S. has more than doubled since 2012. That has put the life-saving hormone out of reach for some people with diabetes...especially if they lack the appropriate insurance and have high deductibles....or Nicole Holt-Smith, as well as a growing number of online activists who tweet under the hashtag #insulin4all, much of the blame should fall on the three main manufacturers of insulin today: Sanofi of France, Novo Nordisk of Denmark and Eli Lilly and Co. in the U.S. The three companies are being sued in the U.S. federal court by diabetic patients in Massachusetts who allege the prices are rising at the expense of patients' health.
• Insulin prices could be much lower and drug makers would still make healthy profits (Ed Silverman, STAT, 9-25-18) As prices for diabetes treatments continue to roil consumers, a new study suggests that manufacturers could make both human and analog insulins at low costs and still pocket a profit. The study estimated the cost of production for a vial of human insulin is between $2.28 and $3.42, while the production cost for a vial of most analog insulins is between $3.69 and $6.16. “Pharmaceutical companies cannot justify charging governments $532 per person per year in the U.K. and $1,251 in the U.S., let alone similar amounts in low- and middle-income countries.

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• New Bill Aims to End Racial Disparities in Amputations ( Lizzie Presser, ProPublica, 10-19-2020) Informed by a ProPublica article investigating why Black Americans were three times more likely to undergo diabetic amputations, five members of congress are working to fund screening and enhance diagnostics in an effort to save limbs.
• The Black American Amputation Epidemic (Lizzie Presser, ProPublica, 5-19-2020) By one measure, diabetic amputations are the most preventable surgery in the country. "But black patients were losing limbs at triple the rate of others. The doctor put up billboards in the Mississippi Delta. Amputation Prevention Institute, they read. He could save their limbs, if it wasn’t too late." Underlying message of this investigative story: the importance of policies to support access to clinically appropriate PAD screening and treatment for America’s most at-risk patient populations.
• Factors contributing to higher incidence of diabetes for black Americans (NIH Research, 1-9-18) A study found that biological risk factors—including weight and fat around the abdomen—are primarily responsible for higher rates of diabetes for black Americans compared with white Americans. The study found that the chance of developed diabetes was significantly higher for black adults than for white adults (about 66 more cases of diabetes per 1,000 people). The greatest difference was between black women and white women.
• Lilly Diabetes Solution Center Now Open to Help People with Insulin Affordability (8-1-18) Starting today, people can dial (833) 808-1234 to access potential cost savings on Lilly insulins.
• What I need to know about Eating and Diabetes (The National Institute of Diabetes and Digestive and Kidney Diseases -- NIDDK). Check out Kidney disease, kidney failure, dialysis, and kidney transplants for information on dialysis.
• Dialysis Compare
• Diabulimia (National Eating Disorders Association, NEDA), a non-clinical, media-coined term used to describe an eating disorder that affects some individuals with type 1 diabetes, who purposely restrict insulin in order to lose weight. Also referred to as the Dual Diagnosis of Eating Disorder and Diabetes Mellitus Type 1 (ED-DMT1).
• Century-Old TB Vaccine Shows Promise Against Type 1 Diabetes, MGH Research Finds (Justin Kaplan, WBUR, CommonHealth, 6-21-18) A new study finds that an inexpensive vaccine used globally to prevent tuberculosis may help treat Type 1 diabetes — if given time to kick in.The long-term data suggests the vaccine, the 110-year-old Bacille Calmette-Guerin, or BCG, does lower blood sugar in people with Type 1 diabetes - but it takes a few years to see that effect. Due to the low risk of TB in the United States, the Centers for Disease Control and Prevention recommends the BCG vaccine only for those at high risk of TB exposure. Faustman's lab is currently conducting multiple clinical trials on the vaccine's secondary effects on Type 1 diabetes.
• Hospitals Lure Diabetes Patients With Self-Care Courses, But Costs Can Weigh Heavily (Julie Appleby, KHN, 4-26-18) This story also ran on The New York Times. When a routine physical revealed mildly elevated blood-sugar levels, Michael P was strongly encouraged to sign up for a diabetes self-management class...But the 64-year-old retired bank analyst was flabbergasted when he opened his bill after attending. “What, $1,044 for a class?” The classes serve a function but have also become a revenue generator for hospitals and an opportunity for marketing and branding.
• Discovery, Interrupted (Jeffrey Friedman, Harper's, 11-25-18) How World War I delayed a treatment for diabetes and derailed one man’s chance at immortality. Interesting medical history.

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• National Diabetes Education Program (NDEP, NIDDK)
• Flurry of Federal and State Probes Target Insulin Drugmakers and Pharma Middlemen (Sarah Jane Tribble, Kaiser Health News, 10-30-17) 'With the price of a crucial diabetes drug skyrocketing, at least five states and a federal prosecutor are demanding information from insulin manufacturers and the pharmaceutical industry’s financial middlemen, seeking answers about their business relationships and the soaring price of diabetes drugs....Insulin makers Eli Lilly, Novo Nordisk, Sanofi and top pharmacy benefit manager CVS Health are targets in the state investigations. Several of the financial filings note that the state and federal prosecutors want information regarding specific insulins for specific dates in relation to “trade practices.” They appear to be looking into potentially anti-competitive business dealings that critics have leveled at this more than $20 billion niche market of the pharmaceutical industry...These include whether drugmakers and middlemen in the supply chain have allowed prices to escalate in order to increase their profits. At the same time, prominent class-action lawyers are bringing suits on behalf of patients. At the same time, prominent class-action lawyers are bringing suits on behalf of patients. Steve Berman, an attorney best known for winning a multibillion-dollar settlement from the tobacco industry, alleged collusion and said it was time to break up the “insulin racket.” The price of insulin — a lifesaving drug — has reached record highs as Eli Lilly, Novo Nordisk and Sanofi raised prices more than 240 percent over the past decade to often over $300 a vial today, with price rises frequently in lockstep...in the final months of 2007, Sanofi’s Lantus cost $88.20 per vial and Novo Nordisk’s Levemir $90.30 a vial. Today, after increasing in tandem over the years, Lantus costs $307.20 per vial and Levemir runs $322.80 for the same amount, based on average wholesale prices."
• Healthy recipes (Diabetes Action Research and Education Foundation)

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• Advice for Newbies (David Mendosa)
• Secondhand Smoke Linked to Higher Odds of Developing Gestational Diabetes (11/2017, one of many blog posts on Ask Joslin, Joslin Diabetes Center)
• Cast by Chronic Illness Into a Limiting Role (Maris Kreizman, Longreads, Nov. 2017) Maris Kreizman dreamed of attending performing arts camp, but she ended up homesick at diabetes camp instead. "Most of the time I keep quiet about diabetes, and certainly don’t seek a community around it, because I don’t want it to be my identity. I don’t want to be Diabetes Lady."
• The A1C Blood Sugar Test May Be Less Accurate In African-Americans (Richard Harris, All Things Considered, NPR, 2-7-17) Doctors have been cautioned before that results from the A1C test don't have pinpoint accuracy. A study published Tuesday underscores that shortcoming as it applies to people who carry the sickle cell trait.
• Geek of the Week: Dana Lewis built her own artificial pancreas, and is helping hundreds of other people do the same(Clare McGrane, GeekWire, 4-7-17) Dana Lewis is the creator of the Do-It-Yourself Pancreas System, an entire artificial pancreas that includes a blood glucose monitor and an automatic insulin adjustor. Lewis is also the founder of the “open source artificial pancreas system movement (#OpenAPS, which now has more than (n=1)*250+ people worldwide using DIY artificial pancreases), and a passionate advocate of patient-centered, -driven, and -designed research."
• Bright Spots & Landmines: An Interview with Adam Brown (Kerri, Six Until Me, 5-24-17). Get Adam's book here (on diaTribe site).
• Diabetic Connect, a social network for people with diabetes. "We make it easy to start conversations, share treatments, read and post treatment recommendations, etc."

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• Diabetes: The Invisible Epidemic (Palm Beach Post, special multimedia report and series)
• A Life-Changing Diagnosis: Type 1 Diabetes (Aliyah Baruchin, Health, NY Times, 8-28-08) "Ninety percent to 95 percent of all cases of diabetes are Type 2, or adult-onset, a disease frequently linked to obesity. But Type 1, known as juvenile diabetes, is not governed by lifestyle. It is an autoimmune disorder in which the body attacks the beta cells in the pancreas that produce the hormone insulin. Because people with Type 1 produce no insulin, they cannot survive without injecting it before each meal, and they must test their blood several times a day to check their glucose levels." When one twin came down with the disease, the other twin became the first person to enroll in a clinical trial for an oral insulin.
• Helping Patients Get Past Diabetes Denial (Medpage Today)

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• Type 2 Diabetes Has Been "Reversed" in 40% of Patients for 3 Months (Peter Dockrill, Science Alert, 3-17-17)
• Mining the 'wisdom of crowds' to attack disease (Science Daily, 9-29-10) A large, multidisciplinary panel has recently selected 12 pioneering ideas for attacking type 1 diabetes, ideas selected through a "crowd-sourcing" experiment called the Challenge in which all members of the Harvard community, as well as members of the general public, were invited to answer the question: What do we not know to cure type 1 diabetes?
• Medscape stories about diabetes care by Anne Peters, MD. For example, New Insulins: Benefits and Challenges (12-11-15)
• Hot Drugs Show Sharp Price Hikes in Shadow Market (Robert Langreth, Bloomberg News, 5-6-15). Why diabetes drug prices are soaring. Sanofi and Novo “are taking the same price increase down to the decimal point within a few days of each other,” said Richard Evans, an SSR analyst. “That is pretty much a clear signal that your competitor doesn’t intend to price-compete with you.” A pattern of insulin makers matching each others price increases “certainly indicates a market that isn’t competitively healthy,” said David Balto, an antitrust lawyer and former Federal Trade Commission policy director. However, if two companies act independently to follow each other’s price increases, it’s not an antitrust violation, he said.
They call it "shadow pricing," when "prices for some competing drugs go up in lockstep, rising the same amount at about the same time."
• Bernie Sanders calls for federal investigation of insulin makers for price collusion (Ed Silverman, STAT, 11-3-16) In his latest attack on the pharmaceutical industry, Senator Bernie Sanders has asked the Department of Justice and the Federal Trade Commission to investigate three insulin makers for price collusion. The practice known as shadow pricing was first reported by Bloomberg News. “The original insulin patent expired 75 years ago. Instead of falling prices, as one might expect after decades of competition, three drug makers who make different versions of insulin have continuously raised prices on this life-saving medication,” the lawmakers wrote. “In numerous instances, price increases have reportedly mirrored one another precisely.”
Drug makers in general argue that they have to raise prices in order to give substantial rebates to pharmacy benefit managers, which are the middleman that negotiate with health plans.
• Diabetes Patients 'Screaming' About Insulin Costs (Mark Harmel, Medscape, 4-18-16) The ones who are really screaming are the Medicare patients with type 2 diabetes who haven't been on insulin for that long and, because they fall into the "doughnut hole," can't afford their insulin. The newly insured patients who didn't understand what it means to have a high deductible are struggling because they're paying the full price. And, some patients have seen their insulin copays increase to a level where they can't even afford the copays.
• Texas Judge Upends Effort To Limit Charity Funding For Kidney Care (Michelle Andrews, Shots, NPR, 2-14-17) A federal judge issued a preliminary injunction barring the government from enforcing a rule allowing insurers to refuse to insure dialysis if the centers providing it are making premium payments either directly or indirectly through a third party for people covered by marketplace plans. [I'm not sure I got this right. Read the article!]
• What's Your Type? With Diabetes, It Can Be Unclear (Miriam E. Tucker, NPR, 1-25-16) A drop in the number of newly-diagnosed diabetes cases is good public health news. But for the Type 1 diabetes community it's a source of frustration, because the numbers hide their story. While it's certainly the right direction for the more common Type 2 diabetes, the findings don't apply to Type 1, a different condition that appears to be on the rise and that is not caused by obesity or lifestyle factors.
• Exposure to Fine Particulate Air Pollution Causes Vascular Insulin Resistance by Inducing Pulmonary Oxidative Stress (Petra Haberzettl and others, Environmental Health Perspectives, 4-29-16). Or in plainer English, Effect of environmental air pollution on type 2 diabetes mellitus. (SA Meo and others, Eur Rev Med Pharmacol Sci, 1-19-15, on PubMed). Exposure to air pollutants is significantly associated with increased risk of type 2 diabetes mellitus. EPA, take note.
• Diabetes was once a problem of the rich. Now it belongs to the poor. (Niraj Chokshi, WaPo, 4-7-16) What was once predominantly a rich-country problem has become one that disproportionately affects poorer countries. With urbanization, eating habits are changing and so are levels of physical activity and access to healthy foods, but scientists don't have a full explanation for rising levels of diabetes among the poor.

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• Type 1 Diabetes TrialNet, a network of diabetes research centers.
• My Beloved World by Sonia Sotomayor. This memoir from the first Latino and third female Supreme Court Justice makes very clear the role her diagnosis with juvenile diabetes at eight years of age played in her success. She had to give herself insulin shots even as a child and the process made her disciplined.
• Diabetes Prevention That Works (Paula Span, New Old Age, NY Times, 12-26-14) "Increased exercise and healthier eating, the program’s central tenets, have become so broadly understood that you might wonder why sitting in a room with a dozen others helps people achieve them. But research shows that it does."
• Public Radio’s Kurt Andersen Tackles Misunderstandings About Diabetes (Here & Now, 8-16-12). He talks about the disease and about myths that can kill (when the blood sugar falls low, it is NOT dangerous to give him an orange to suck on -- it might save his life). His novel, True Believers, a coming-of-age story and political mystery, features a main character who has diabetes I.

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• Diabetes is even deadlier than we thought, study suggests (Arlene Karidis, WaPo, 4-7-17) Nearly four times as many Americans may die of diabetes as indicated on death certificates, a rate that would bump the disease up from the seventh-leading cause of death to No. 3, according to estimates in a recent study. Researchers and advocates say that more-precise figures are important as they strengthen the argument that more should be done to prevent and treat diabetes, which affects the way sugar is metabolized in the body. (Via KHN)
• As Childhood Diabetes Rates Rise, So Do Costs — And Families Feel the Pinch: Study (Carmen Heredia Rodriguez, Kaiser Health News, 6-20-16) Although more prescriptions and frequent doctor’s visits help explain the difference in the health care costs generated by children with and without this illness, researchers were still surprised by the magnitude of the disparity.
• Why Is Insulin So Expensive in the U.S.? (Anders Kelto, Morning Edition, NPR, 3-19-15) Incremental improvements in the drug — and the disappearance of older versions, which aren't as profitable (but work better for many patients) -- have kept prices high. A more affordable version is needed.
• What does your pancreas do? (Emma Bryce and Bill Keaggy, TED-Ed) Excellent illustrated explanation.
• Listening to Older Patients Who Want to Stop Dialysis (Judith Graham, KHN, 2-28-19) "With dialysis, people are hooked up to a machine that removes waste from their blood, usually three times a week for four hours at a stretch. Many older adults find the treatments burdensome, and medical complications are common. Yet patients who expressed reservations about this treatment were sometimes labeled as difficult or unprepared to confront the reality of their medical condition....“Clinical practice guidelines for advanced kidney disease are geared toward survival, not what would give patients the best quality of life or the greatest functional capacity,” Wong said. Another factor at play: Nephrologists aren’t trained to ask seriously ill patients what’s most important to them and shape treatment recommendations accordingly. Although most patients want to have such conversations with a kidney specialist, few do so, studies have found."
• Diabetes Linked to Memory Problems in Older Adults (Anahad O'Connor, Well, NY Times, 6-19-12) A new study adds to growing evidence that the complications of diabetes may extend to the brain, causing declines in memory, attention and other cognitive skills.
• National, state and county data/statistics (CDC, viewable on any device, it says here), and Rates of Diagnosed Diabetes per 100 Non-Institutionalized Civilians, by age, 1980-2014, also CDC.
• Diabetes (PubMed Health, medical encyclopedia entry -- see "what works" top right, click on "see all")
• Diabetes Factsheet (World Health Organization)
• Guidelines for the Care of Older Adults with Diabetes (Joslin Diabetes Center)
• Managing Older People with Type 2 Diabetes Global Guidelines (International Diabetes Federation)

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• Diabetes Online Community (DOC)
• Diabetes support groups (Inspire website)
• DiabetesWorld (a Yahoo discussion list for people with Diabetes Mellitus to exchange ideas about the disease, its treatment, diet, blood glucose monitoring, and improving the quality of life)
• Looking for Early Warning Signs of Pancreatic Cancer (Jane E. Brody, Personal Health, NY Times, 2-7-22) Scientists are exploring whether the onset of diabetes may in some cases herald the existence of one of the most deadly of all cancers.
• Obesity and Diabetes Tied to Liver Cancer (Nicholas Bakalar, NY Times, 10-14-16) "A large study has found that body mass index, waist circumference and diabetes are all associated with an increased risk for liver cancer. Liver cancer is the sixth most common cancer, and its incidence has tripled since the mid-1970s in the United States....For each 2-inch increase in waist circumference, the risk of liver cancer increased by 8 percent, even after controlling for B.M.I. And those with Type 2 diabetes had more than double the risk of liver cancer, even among the non-obese."
• Guidelines Give A Boost To Diabetes Screening For Overweight Adults (Michelle Andrews, Shots, NPR, 12-4-15) In the past, "if a 55-year-old patient was overweight and she wanted to order a blood glucose screening test, some insurers balked at covering the test. She would sometimes have to justify it by stating that the patient was complaining of fatigue, for example. Now, insurers must cover the screening tests as well as counseling at the primary care practice office or off site at a hospital or elsewhere in the community.
• Big Health Benefits to Small Weight Loss (Roni Caryn Rabin, Well, NY Times, 2-25-16) "Obese individuals who lose as little as 5 percent of their body weight can improve their metabolic function and reduce the risk of developing Type 2 diabetes and heart disease, a new study has found."
• Diabetes Overview--frequently asked questions (National Diabetes Information Clearinghouse)
• Diabetes Action , research and educational foundation, funding research that otherwise might not get done. View videos from past Diabetes University presentations
• Diabetes Directory (David Mendosa's comprehensive site) and Online Diabetes Resources (also his). A journalist who writes about diabetes, Mendosa also has it.

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• 100-year-old vaccine wins FDA approval for human clinical trials to reverse Type 1 diabetes (Jen Hayden, Daily Kos, 6-8-15) Scientists at Massachusetts General Hospital are hoping to prove that type 1 diabetes can be reversed with the help of a generic drug, a 100-year-old vaccine for tuberculosis.
• The Edmonton Protocol (Jerome Groopman, New Yorker, 2-10-03) The search for a cure for diabetes takes a controversial turn--human islet-cell transplants.
• The Glycemic Index , which ranks food according to how it affects blood sugar levels (David Mendosa explains and provides helpful links. Particularly helpful: the Revised International Table of Glycemic Index (GI) and Glycemic Load (GL) Values—2008 (courtesy of the author, Professor Jennie Brand-Miller of the University of Sydney)
• The Glucagon Connection (Gretchen Becker, 12-21-11). "Insulin and glucagon are like the accelerator and brake on your car. And it's the ratio of the two, rather than the absolute amount, that is important. If you have almost no insulin, you might be able to have normal BG levels if you also had almost no glucagon."
• Blood Sugar 101: What They Don't Tell You About Diabetes

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• Taking a Walk After a Meal Aids Digestion (Anahad O’Connor, Well, NY Times 6-24-13). Walking speeds the rate at which food moves through your stomach, and "walking for 15 minutes shortly after each meal improved daily blood sugar levels to a greater extent than a single 45-minute walk in the morning."
• Proteomics Might Have Saved My Mother’s Life. And It May Yet Save Mine. (Michael Behar, NY Times, 11-15-18) 'The 20,000 or so known proteins in each human body might soon be used as an early warning system for disease.... Proteomics, or the study of proteins, has long offered the ability to identify many biological processes.... Now, with the advent of more powerful computers and a form of artificial intelligence called machine learning, medical experts are imagining a future where proteomics will realize its power to tell us, to an incredible degree, what’s transpiring inside our bodies....

     As the workhorses in the human body, proteins play a role in nearly all of its biological processes.... Researchers are now learning that diseases have their own unique proteomic patterns.... “Diagnostic medicine has always been about proteins,” says Philip Ma, Seer’s president and chief business officer. “All proteomics is allowing you to do is to look at them in bunches instead of one at a time.” ...Doctors won’t embrace the technology until they are sure that protein screenings provide reliable results, but improving reliability is largely contingent on widespread adoption....[It's still early days.] While allocating most resources to the big three — cancer, heart disease and diabetes — SomaLogic also is delving into realms that traditionally haven’t been studied with proteomics, such as smoking, social deprivation, excessive alcohol consumption and fitness.'
• 50 Diabetes Myths That Can Ruin Your Life: And the 50 Diabetes Truths That Can Save It by Riva Greenberg (as reviewed on
Diabetes Mine, 7-6-09).
• MyDiabetesCentral.com, the diabetes section of HealthCentral.com
• The First Year: Type 2 Diabetes: An Essential Guide for the Newly Diagnosed by Gretchen Becker
• Second Story Woman: A Memoir of Second Chances by Carole Calladine, a memoir of experiencing a midlife crisis, second chances, and the onset of type II diabetes.
• MyDiabetesCentral on HealthCentral (online resources for people with various health problems)
• National Diabetes Information Clearinghouse (NDIC) (NIDDK)
• It’s Not Just Insulin: Diabetes Patients Struggle To Get Crucial Supplies ( Bram Sable-Smith, KHN, 9-24-19) Ric Peralta is able to check his blood sugar levels at any time, using the Dexcom app and an arm patch that measures the levels and sends the information wirelessly. It became hard to imagine life without his new monitor, a device that lets him track the trends in his blood sugar 24 hours a day on his smartphone. And yet, he has spent weeks at a time without the device over the past year because of insurance restrictions. Physician groups and patients consider those rules burdensome, but insurers defend them as necessary.
•What's the relationship between diabetes and dementia? (Andrew E. Budson, MD, Harvard Health Publishing, 7-12-21) Due to increasing rates of obesity, inactivity, and an aging population, type 2 diabetes is more prevalent in our society than ever before.
      Particularly troubling is that type 2 diabetes is now being seen frequently in children, due to their obesity and inactivity. It has been known for many years that type 2 diabetes increases your risk for strokes and heart disease. More recent studies have shown that diabetes also increases your risk of dementia. The earlier you develop diabetes, the greater your risk is for developing dementia.
Reduce your risk of diabetes and dementia:
   Engage in aerobic exercise at least 30 minutes each day, five days each week.
   Eat a Mediterranean-style menu of foods.
   Maintain a healthy body weight.
   Treat high blood pressure.
   Treat high cholesterol.
   't smoke.
"Lastly, social activities, a positive attitude, learning new things, and music can all help your brain work at its best and reduce your risk of dementia."
• Top 10 Resources for Information About Diabetes (David Mendosa)
• Weight Loss Surgery May Not Combat Diabetes Long-Term (Anahad O'Connor, Well, NY Times, 11-28-12)
• Gastroparesis (ADA) Gastroparesis is a disorder affecting people with both type 1 and type 2 diabetes, in which the stomach takes too long to empty its contents (delayed gastric emptying). If the vagus nerve, which controls the movement of food through the digestive tract, is damaged or stops working, the muscles of the stomach and intestines do not work normally, and the movement of food is slowed or stopped. If other solutions to the problem do not work, the patient may need surgery to insert a feeding tube (called a jejunostomy tube), which allows him to insert nutrients (special liquid food) directly into the small intestine, bypassing the stomach.
• Diabulimia: All in Our Heads? (Amy T, DiabetesMine, 10-28-10). In 2007, journalists began writing about diabulimia (women with type 1 diabetes, who were shunning their medication for fear of getting fat-- or restricting or stopping taking their insulin to lose weight). See articles by expert Ann Goebel-Fabbri, at the Joslin Diabetes Center. There is a new book by Maryjeanne Hunt about battling this eating disorder: Eating to Lose: Healing from a Life of Diabulimia, which is reviewed here.
• New Insights Into the Link Between Obesity and Diabetes (Dan Ferber, Healthy Imagination 11-1-11)
• Endoscopic Approaches Emerging For Diabetes ( Christina Frangou, General Surgery News, 6-15-16) Promising, but Most Experts Agree ‘Prime Time’ Still a Ways Off
• Diabetic Shoes Hub (this is not an endorsement--just to let you know it exists)
• OrthoFeet (also, not an endorsement, just to note they sell shoes for people with diabetes).

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Blogs and columns on diabetes include:

• Diabetes Blogs and Forums (diaTribe's annotated guide)
• Wildly Fluctuating, Gretchen Becker's musings on diabetes news of the week by a Type 2 diabetes patient-expert, and Gretchen Becker's share posts on MyDiabetesCentral.com, the diabetes section of HealthCentral.com. See also Gretchen's book, The First Year: Type 2 Diabetes: An Essential Guide for the Newly Diagnosed
• Diabetes Daily (David and Elizabeth Edelman
• Diabetes Mine (Amy Tenderich focuses on type 1 diabetes, providing news about diabetes research and devices)
• Diabetes Self-Management
• Type 2 Diabetes--A Personal Journey (Alan Shanley's experiences, down under--he's an Aussie)
• Diabetes Update (blog, what they don't tell you about diabetes)
• Diabetes Stops Here (blog of the American Diabetes Association)
• The 17 Best Diabetes Blogs of 2012 (Leah Snyder, Healthline, 3-29-12)
• Top Seven Diabetes Blogs/Social Networking Sites (Hope Warshaw, Eat Healthy, Live Well, 5-25-10)
• SEARCH for Diabetes in Youth
• Diabetes Atlas (International Diabetes Federation)

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Camptocormia

(aka bent spine syndrome, or cyphose hystérique)

• Camptocormia (International Neuromodulation Society) "Camptocormia is an uncommon condition in which the spine bends forward during walking or standing, but not when lying down. The condition can be accompanied by lower back pain. Camptocormia can be due to central nervous system diseases, such as Parkinson's disease, dystonia, multisystem atrophy, or Alzheimer's disease, or to peripheral nervous system diseases, such as primary myopathy, secondary myopathy, motor neuron disease, myasthenia, or chronic inflammatory demyelinating polyneuropathy."
• A Case of Camptocormia (Bent Spine) Secondary to Early Motor Neuron Disease (includes image of a patient with camptocomia)
• A specific clinical pattern of camptocormia in Parkinson's disease (A‐C Lepoutre, D Devos, [...], and L Defebvre, J Neurol Neurosurg Psychiatry. 2006;77(11):1229–1234. doi:10.1136/jnnp.2005.083998. Camptocormia, characterised by extreme forward flexion of the thoracolumbar spine and severe stooping in the supine position, seems to be prevalent in Parkinson's disease.

Celiac disease

• Celiac Disease Support Groups (Beyond Celiac "Together for a Cure") \

• Research News (Beyond Celiac)
• Celiac Disease Foundation (many resources, including a symptom checklist)
• Celiac.com
• An overview of celiac disease (Jane Anderson, VeryWell, 7-13-16)
• Cooking Without Gluten (Utah State University Cooperative Extension) (PDF, 26 pages of recipes and information)
• Common Gluten-Free Alternatives: What are they and how can I use them? (Melissa Marek, NFCA)
• How can I prevent gluten cross-contamination? (Oregon State University Extension Service)
• Foods to Avoid (PDF, NIDDK, Examples from Gluten-Free Diet)
• Eating Gluten-Free for Health (Orbera.com, a managed weight-loss program) Many helpful links, about gluten-free diets, especially. (Thanks, Gabbie and Denise!)
• Gluten-Free Diet (PDF, University of North Carolina School of Medicine)
• Information about Celiac Disease (National Institute of Diabetes and Digestive and Kidney Diseases, or NIDDK)
• Understanding Gluten (Health and Wellness, Vanderbilt)
• Going Gluten-Free (Katherine Kam, WebMD) What to know about celiac disease, gluten sensitivity, and gluten-free diets.
• What is celiac disease? (WebMD answers this question and more)
• Support Groups for Celiac Disease (Marie Suszynski, Everyday Health) Connecting with other people who have celiac disease can help you stay on a gluten-free diet.
• Wheat Allergy Diet (University of Rochester Medical Center) What's allowed and what's not allowed.
• Why I hid my happy, healthy daughter’s medical diagnosis from her for as long as I could (Susan Stillman, Washington Post, 2-8-16) "They told us that while children with Celiac who eat gluten can appear to be fine, doing so continuously can cause damage in the longer-term that has been linked to an increased risk of intestinal cancers, osteoporosis, and infrequently neurological conditions like epilepsy."..."I think I'll start by going gluten-free for breakfast," she announced.
• Personal stories about celiac disease (Celiac Disease Foundation)
• What does it feel like to go from physically unattractive to attractive? What kind of reactions did you get from strangers before and after? How did it change you? Do you now take advantage of your looks? (Nicolas Cole, Quora, 2-22-15) A little different from the other items linked to!
• Doctor Horror Stories (Gluten Dude, on misdiagnosis and other medical failures)
• My Celiac Story: Jennifer Harris (Canyon Bakehouse)
• Patient Comments, Celiac Disease Symptoms (MedicineNet.com)

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Cerebral palsy

• Facts About Cerebral Palsy (CDC) "Cerebral palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. CP is the most common motor disability in childhood. Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles. CP is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles. The symptoms of CP vary from person to person. Goes on to describe the four main types of CP, early signs, screening and diagnosis, treatments and interventions, causes and risk factors, and so on.
• Cerebral Palsy information page (National Institute of Neurological Disorders and Stroke)
• Cerebral palsy (Mayo Clinic overview)
• What is cerebral palsy? (Cerebral Palsy Alliance)
• My Child Without Limits•
• Resources (United Cerebral Palsy) Life without limits for people with disabilities.
• The Girl From Aleppo (Brent Crane, via Narratively, Folks: A Pillpack Magazine, 6-8-17) Fleeing the war in Syria is perilous even when you can walk, but Nujeen Mustafa, who was born with cerebral palsy, had to make the 2,200 mile journey by wheelchair.
• My Left Foot by Christy Brown. The story of an Irish boy born in Dublin in 1932, who, after a difficult birth, was developmentally disabled, probably with cerebral palsy--spastic, and pronounced an imbecile by doctors. His mother refused to believe he was imbecile and taught him to read and write (and paint with his toes). Made into a movie featuring Daniel Day Lewis. See also Christy Brown: The Life that Inspired My Left Foot by Georgina Louise Hambleton.
• Restricted Access: Lesbians on Disability (Brownsworth, Victoria A. and Susan Raffo, eds.) Contributors to this anthology write about the reality of being a "member of a doubly marginalized group in a phobic society," and often homophobic doctors--and write about a range of disabilities (including those from birth defects, AIDS, deafness, chronic fatigue syndrome, mental illness, cerebral palsy.
• Adaptive Apparel (on this page, benefiting Cerebral Palsy wearers)

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Charcot-Marie-Tooth Disease

One of the hereditary motor and sensory neuropathies, a group of varied inherited disorders of the peripheral nervous system characterized by progressive loss of muscle tissue and touch sensation across various parts of the body.

• Charcot-Marie-Tooth Disease Fact Sheet (National Institute of Neurological Disorders and Stroke, NINDS).
Charcot-Marie-Tooth Disease (Patient Voices, NY Times interactive--listen to people living with C.M.T.). CMT is an inherited disorder affecting nerves in the hands, arms, feet and legs. Because it causes weakness in the hands, arms, feet and legs, CMT can cause difficulty walking and performing tasks. Symptoms generally begin in childhood and progress slowly; patients eventually have difficulties with balance, walking and grasping objects. Here six men and women speak about living with CMT. Sometimes when they learn they have the disease, they begin to learn that others in the family have it also (but never talk about it).
• Charcot-Marie-Tooth Disease (Wikipedia article with many helpful links) Symptoms of CMT usually begin in early childhood or early adulthood, but can begin later. Some people do not experience symptoms until their early 30s or 40s. Usually, the initial symptom is foot drop early in the course of the disease. This can also cause hammer toe, where the toes are always curled. Wasting of muscle tissue of the lower parts of the legs may give rise to a "stork leg" or "inverted champagne bottle" appearance. Weakness in the hands and forearms occurs in many people as the disease progresses.
• Charcot-Marie-Tooth Disease (CMT) (Muscular Dystrophy Association) Named after the three physicians who first described it in 1886 — Jean-Martin Charcot and Pierre Marie of France, and Howard Henry Tooth of the United Kingdom. Helpful illustration.

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Chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS)

Other names for it (or subtypes): myalgic encephalomyelitis (ME), systemic exertion intolerance disease (SEID), chronic fatigue immune dysfunction syndrome (CFIDS), and post-viral fatigue syndrome (PVFS).

• A geneticist’s biggest challenge: Curing his own son (Michaela Haas, Al Jazeera, 1-2-21) How renowned scientist Ron Davis is fighting to cure his son’s chronic fatigue syndrome, and why COVID patients may benefit. A long read.
• Don't wait for a cure to appear. "I had to change my life to get relief," writes Zachary Sklar (WashPost 10-27-09)."I had to take responsibility for changing the habits, the diet, the life patterns that contributed to my getting sick in the first place."
• CFIDS Association of America The CFIDS Association of America is that the largest and most active charitable organization dedicated to chronic fatigue syndrome (CFS), additionally called chronic fatigue and immune dysfunction syndrome (CFIDS).
• Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (CDC)
• ME/CFS Worldwide Patient Alliance
• CDC info on CFS
• Justice, finally, for stricken Washington Post reporter (David Beard, Poynter, 6-4-18) Science reporter Brian Vastag 'fell ill with “the most forlorn of orphan illnesses” — myalgic encephalomyelitis, or "painful inflammation of the brain and spine." It’s commonly known as chronic fatigue syndrome, a vague and misunderstood condition.' The insurance company dropped his short-term disability and denied his bid for long-term disability. 'Last week, a federal judge ordered Prudential to pay up, in a decision that offered hope to those with ME. The judge was appalled that Prudential produced “experts” who counseled “working through” the illness, which is known to make it worse.'
• Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases (Ed Yong, The Atlantic) Only a couple dozen doctors specialize in chronic fatigue syndrome (ME/CFS). Now their knowledge could be crucial to treating millions more patients.
• Worse Than the Disease (David Tuller, Undark, 10-27-16) A popular therapy for chronic fatigue syndrome made many patients worse. Adding insult to injury, research supporting it is now unraveling. After living in Oklahoma for 40 years, Nita and Doug Thatcher retired in 2009 to the Rust Belt city of Lorain, Ohio, a Cleveland suburb that hugs Lake Erie. When Nita needed to find a new primary care doctor, a friend recommended someone from the Cleveland Clinic. Nita knew the institution’s reputation for cutting-edge research and superior medical services. But as a longtime patient grappling with chronic fatigue syndrome, a debilitating disorder that scientists still don’t fully understand, she was wary when she learned that the clinic was promoting a common but potentially dangerous treatment for the illness: a steady increase in activity known as graded exercise therapy.
• Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand by Julie Rehmeyer, describes the science and politics of chronic fatigue syndrome and other poorly understood illnesses. Rehmeyer "emerges as simultaneously a science journalist frustrated with established medicine’s dismissiveness, a patient open to the pseudoscientific approaches of non-traditional practitioners, and a desperate woman reaching out to suffering peers on the Internet for support and advice. This last avenue ultimately leads her to an extreme removal of mold from her environment, starting with a body-resetting solo expedition to Death Valley. Exploring ideas of dependence and self-sufficiency, Rehmeyer shows her illness through the lens of her personal relationships...Rehmeyer’s frustrated but cautiously optimistic story will resonate with readers who value an intelligent, scientific approach to life but wonder what to do when there aren’t any good answers."~Publishers Weekly
• Scientific American's review of Rehmeyer's book (Evelyn Lamb, 5-23-17) calls it "a moving portrait of a person living expansively in the face of setbacks and limitations....she had gotten dramatically better through extreme mold avoidance. Rehmeyer doesn’t have a mold allergy exactly, but she has the unwelcome superpower of being able to detect minuscule amounts of mold in a building; unfortunately, her way of detecting it leaves her almost unable to walk...[she writes] about the challenge of having an illness science doesn’t understand and treating it using techniques not approved by scientists.
• David Tuller Untangles the Research History of Chronic Fatigue Syndrome (Julie Rehmeyer, The Open Notebook, 1-18-12) This is about writing a well-researched piece on a complicated, even controversial, disease, and if you're dealing with that disease, it's worth a read. He wanted to write "something that patients felt represented some of the frustration they’d experienced in the past 20 years." See also his earlier piece (Virology, 2011): Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale.
• NIH Study Aims to Unravel the Illness Known as 'Chronic Fatigue Syndrome' (Miriam E. Tucker, Shots, NPR, 5-1-17) 'Many with the condition dislike the name "chronic fatigue syndrome" because they feel it's trivializing and misleading, giving the impression that they're simply tired or depressed when in fact many are quite ill. Nailing down the cause — or, more likely, causes — of the illness has proved exceptionally difficult, since patients' symptoms vary tremendously. Routine laboratory tests are often negative, but even when they detect abnormalities, those are usually not specific enough to be helpful.' The first phase of the NIH study "includes 40 people with ME/CFS, as well as 20 who previously had Lyme disease and another 20 healthy controls....The current hypothesis, Nath says, is that, in contrast to people with normal immune systems that act to quell an infection and then subside, there is "a subset of individuals whose immune systems overreact and do a lot of collateral damage."...those enrolled had to meet strict criteria for ME/CFS, with the key symptom being the hallmark "crash," like the ones Vastag routinely experiences after even mild activity. The scientific term for that, "post-exertional malaise," is a central part of recent ME/CFS definitions, including one devised for clinical use by the Institute of Medicine in early 2015.'
• Chronic Fatigue Syndrome Research Gains Funding, And Controversy (Miriam E. Tucker, Shots, NPR, 11-4-15) "Starting early next year [2016], the NIH will launch an in-house study of about 40 people who fell ill suddenly after a flu-like illness and never returned to normal. This is a common, though not universal, history among patients with ME/CFS." The NIH study will be unlike the controversial PACE study done in the UK. "The kind of study we want to focus on immediately is to try to understand at the molecular level what is actually causing the problem," says NIH director Francis Collins.
• An Illness Observed: A Conversation with Julie Rehmeyer (Dianne Timblin, American Scientist) "The name chronic fatigue syndrome has created enormous confusion about the nature of the disease, making people think it’s a variation on how they feel when they’re really worn out. That’s simply not the case—we’re sick, not tired." When science did not provide the information she needed, she began listening to patient communities. One group, the "moldies," who felt mold was involved in their illness, recommended spending two weeks in the desert with none of her belongings (which might be contaminated with mold). "This approach appealed to me partly because it was a testable experiment. Plus, I was sick of rotting in bed....Eventually, I concluded that patients possess more wisdom and expertise about this disease than anyone else. [With some caveats.] patients are the ones confronted with the reality of their illnesses, day in and day out, and they’re highly motivated to figure out what will help. They’re sharing the results of their personal experiments online, and they’re finding strategies that make a difference."
• Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back (Julie Rehmeyer, STAT, 9-21-16) "...new findings are the result of a five-year battle that chronic fatigue syndrome patients — me among them — have waged to review the actual data underlying that $8 million study....When the Lancet study, nicknamed the PACE trial, first came out, its inflated claims made headlines around the world. “Got ME? Just get out and exercise...the only evidence the researchers had that patients felt better was that patients said so....Then...David Tuller, a lecturer in public health and journalism at the University of California, Berkeley, wrote in Virology Blog a devastating expose of the scientific flaws of the trial," which had led many doctors to prescribe cognitive behavior therapy or graded exercise for ME/CFS patients.
• David Tuller's TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (Virology blog, 10-21-15)
• The puzzle solver: A researcher changes course to help his son (Tracie White, Stanford Magazine, Spring 2016) From AHCJ award description: ;pThis is a feature on a researcher's race to solve the biochemical puzzle of chronic fatigue syndrome -- the disease afflicting his son. Ron Davis is a wizard at revealing what's invisible to the rest of the world. A renowned geneticist, in 2013, The Atlantic magazine ranked him among the world's greatest living inventors. His biotech methods helped launch the field of genomics, making terms like "artificial chromosomes" and "genome editing" part of the lexicon. A substantial number of the major genetic advances of the past 20 years can be traced back to Davis. Now the focus of his research is to find a cause and a cure for CFS, the disease that has crippled his son Whitney.'
• I’m disabled. Can NIH spare a few dimes? (Brian Vastag, Washington Post, 7-20-15) Where science has failed patients and where there are signs of better focus and potential advances.
• A Memoir of Chronic Fatigue Illustrates the Failures of Medical Research (Andrew Gelman, The New Yorker, 7-9-17--for subscribers only)
• Forgotten Plague: M.E. and the Future of Medicine (documentary film by Ryan Prior (2015).
• Unrest (documentary film by Jen Brea, to air on PBS’s Independent Lens in early 2018, screening in theaters around the world). Jennifer Brea is working on her PhD at Harvard and soon to be engaged to the love of her life when she gets a mysterious fever that leaves her bedridden and looking for answers. Disbelieved by doctors and determined to live, she turns her camera on herself and her community, a hidden world of millions confined to their homes and bedrooms by ME, commonly called chronic fatigue syndrome.
• What Happens When You Have a Disease Doctors Can’t Diagnose? (Jen Brea's 2015 TED talk, 17 minutes).
• "Unbroken" author opens up about her own personal struggle (Face the Nation interview with Laura Hillenbrand, about her experience with chronic fatigue syndrome. Her experience with suffering helped her understand Louis Zamperini, which helped him open up.)
• The Unbreakable Laura Hillenbrand by Wil S. Hylton (NY Times Magazine, 12-18-14). Do read this one. "One peculiarity of chronic fatigue syndrome is the degree to which it can remain invisible: A patient may be in excruciating pain without showing any outward sign of illness. There is still no simple laboratory test for the disease, nor any way to confirm its diagnosis. There is even some debate over what to call it. Many doctors and patients, including Hillenbrand, believe the words “chronic fatigue” sound trivial. They prefer the term “myalgic encephalomyelitis,” or M.E., which refers to inflammation in the brain and spine. Other doctors resist this name, questioning whether patients with the disease reliably exhibit this inflammation. Dr. Charles Shepherd, a medical adviser to the ME Association in Britain, told me that decades of mystery around the illness have only worsened the suffering of victims. “I was taught at medical school 40 years ago that this was all hysterical nonsense,” he said. “It was an illness which was either ignored, or dismissed, or regarded with extreme skepticism.”
• Why Are Doctors Skeptical & Unhelpful about Chronic Fatigue Syndrome? (part 1) (Julie Rehmeyer, guest blog on The Last Word on Nothing). Here's Part 2. And here's Julie Rehmeyer’s Chronic Fatigue Syndrome Recovery Story: Chronic Vigilance (Cort Johnson, Health Rising blog, 5-2-14)
• Health Rising (Looking for Answers to Chronic Fatigue Syndrome and Fibromyalgia)
• Johnson, Hillary. Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic by Hillary Johnson. Writes Goodreads: "For more than a decade a devastating disease has been allowed to spread through our country - unchecked, insufficiently researched, and all but ignored, if not denied, by the medical establishment. In many circles this disease, still known as Yuppi Flu, is dismissed as a psychological aberration. For the nearly two million people who have endured its traumatic and very real debilitating physical effects, however, Chronic Fatigue Syndrome is no joke."
Writes Julie Rehmeyer: "An opus describing the history of chronic fatigue syndrome from the mid-1980s to the mid-1990s. Essential reading for understanding the political mess around this illness."
• Medical, Scientific, Political and Journalistic Pitfalls in the Study of Confusing Illnesses (video of Julie Rehmeyer's talk at Santa Fe Institute on how poorly federal agencies, researchers, doctors, and the media handle confusing illnesses, without clear mechanisms or sharply-defined symptoms, which are often considered psychosomatic. She focuses on CFS but the same pattern operates with AIDS, multiple sclerosis, and chronic Lyme disease.) Listen to the whole thing!
• Lighting Up a Hidden World: CFS and ME by Valerie Free. Julie Rehmeyer: "This book gives a powerful overall picture of the disease, using patients’ experiences (including the author’s), history, poetry, artwork, and more."
• Phoenix Rising, supporting people with chronic fatigue syndrome (ME/CFS)
• Women'sHealth.Gov fact sheet on autoimmune diseases (with fact sheets aboutchronic fatigue syndrome , fibromyalgia, Graves' disease, Hashimoto's disease, inflammatory bowel disease, lupus, myasthenia gravis, thyroid disease)
• CFIDS Association of America (working to conquer chronic fatigue and immune dysfunction syndrome)
• Learning to Live with CFS (Sue Jackson's blog). See also Chronic Fatigue Syndrome: An Invisible Illness (Suzan Jackson, Blisstree, 10-9-08) as well as Suzan'sother essays
• Living With Chronic Fatigue Syndrome (Catherine Morgan)
• Elephants: Another Day with CFS (Linda Koebner, Pulse, 7-12-19) "My symptoms can be mild or strong, and they shift from one body part to another. But for twenty-nine years, one thing has stayed constant: Every morning, as my mind emerges from sleep, the elephants come to visit."
• Living with Chronic Fatigue Syndrome (Doris Fleck)
• Sleepy Dust. for patients with ME/CFS (Myalgic Encephalopathy, Chronic Fatigue Syndrome, Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), or Post Viral Fatigue Syndrome (PVFS)
• Skloot, Floyd. The Night-Side: Chronic Fatigue Syndrome and the Illness Experience (an account of how a mysterious and life-altering illness struck overnight, dramatically changing Skloot's life, and how he dealt with it); a later memoir, in the Shadow of Memory, contains essays about Skloot's experience of losing his memory after being infected by a virus and struggling to regain lost memories.
• Jones, Sue. Parting the Fog: The Personal Side of Fibromyalgia/Chronic Fatigue Syndrome
• Teitelbaum, Jacob. From Fatigued to Fantastic (a guide to treating chronic fatigue and fibromyalgia)
• Low Dose Naltrexone
• Using Antidepressants to Treat Chronic Fatigue Syndrome (CFIDS Association of America
• Orthostatic Intolerance and Its Treatment (Chronic Fatigue Clinic, Johns Hopkins Children's Center, 2010)
• Gentle Medicine : Treating Chronic Fatigue and Fibromyalgia Successfully with Natural Medicine by Lily B. Casura. (Read the Amazon reviews.)

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Digestive Disorders and Diseases

• Treatment Guides, Digestive Disease & Surgery Institute (Cleveland Clinic) Treatment guides for bariatric surgery, colon and rectal cancer, colonoscopy, hemorrhoids, hernia, Hipec procedure, IBD treatment, intestinal rehabilitation and transplantation, J-Pouch, liver transplants, liver tumor clinic, pancreatic disease, pelvic floor (different types of bowel problems), swallowing and esophageal disorders (such as esophagitis, gastroesophageal reflux disease (GERD), Barrett’s esophagus and achalasia). You can download treatment guides, after providing information.
• How to Have Good Digestion Without Heartburn Drugs (Robynne K Chutkan, MD, Show 1078, The People's Pharmacy, 12-27-18) Although some heartburn drugs are available without a prescription, at high doses they increase the risk for stroke. What are the alternatives? Millions of people take medicines like Prevacid, Prilosec or Nexium every day. But while such proton pump inhibitors may ease symptoms of heartburn, they can also lead to serious side effects. Dr. Philip Gorelick, spokesperson for the American Heart Association, describes the research linking these heartburn drugs to an increased risk of stroke.
• Certain lifestyle changes are important if you have frequent heartburn:

---Lose weight, if overweight.

---Change the diet, by reducing fat, chocolate, caffeine, and acid food and fluids (for example, citrus). -

=---Stop smoking.

---Avoid excessive alcohol.

---Avoid food and fluids for 90 to 120 minutes before going to bed.

---Elevate the upper body when lying in bed by (for example, putting blocks under the head of the bed).

---Never abruptly stop taking proton pump inhibitors (PPIs). When PPIs are discontinued, the dose should be gradually decreased (tapered). Tapering the dose minimizes the rebound hypersecretion that can occur when PPIs are stopped.
• What to know about dyspepsia (MedicalNews Today) Dyspepsia, also known as indigestion, refers to discomfort or pain that occurs in the upper abdomen, often after eating or drinking. It is not a disease but a symptom. Causes, symptoms, lifestyle treatments, medications.
• 5 Diet and Lifestyle Measures to Ward Off Heartburn (Jane E. Brody, NY Times, 8-23-21) Taking steps to combat acid reflux can help minimize the use of potentially dangerous drugs.
• Problems Associated with Deprescribing of Proton Pump Inhibitors (Holmfridur Helgadottir1,2 and Einar S. Bjornsson1, NCBI, 11-20-19) Well illustrated medical explanation.
• What causes Barrett's esophagus? (Medicine.net, continued) "Barrett's esophagus is caused by chronic (of many years duration) and usually severe acid reflux. In some patients with GERD, the esophagus reacts to the repeated injury from the acidic fluid by changing the type of cells lining it from squamous (normal cells) to columnar (intestinal-type cells). This transformation, called metaplasia, is believed to be a protective response because the specialized columnar epithelium (epithelium means lining) in Barrett's esophagus is more resistant to injury from acid than the squamous epithelium."
• Will Aspirin Keep Barrett’s from Turning into Cancer? (Terry Graedon, The People's Pharmacy, 11-8-18) Research suggests that aspirin blocks a key inflammatory pathway cells utilize when they are becoming cancerous and could prevent esophageal cancer. If your risk is high, read this article, including the Comments.
• Patient education: Barrett's esophagus (Beyond the Basics) (Stuart J. Spechler, UpToDate, 9-12-18)
• Barrett's Esophagus (Johns Hopkins)

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Diverticulosis and Diverticulitis

• Diverticulitis (Mayo Clinic) Symptoms and causes.
• Diverticulitis (Mayo Clinic) Diagnosis and treatment.
• Diverticulosis and Diverticulitis (American College of Gastroenterology) Diverticulosis refers to the presence of small out-pouchings (called diverticula) or sacs that can develop in the wall of the gastrointestinal tract. While diverticula can be present anywhere in the intestines, they are most common on the left side of the large intestine, the area known as the descending and sigmoid colon. The condition is uncommon in people under the age of 30 years of age, and is most common in those over 60.
Diverticulitis is inflammation of one or a few diverticula in the same area of the colon (usually the sigmoid or descending colon). Diverticulitis occurs in less than 5% of people who have diverticulosis. People with diverticulitis characteristically present with the fairly sudden onset of pain in the abdomen, usually on the lower left side. Other common symptoms include fever, diarrhea and/or constipation, decreased appetite, nausea and fatigue.
• Getting his life back after diverticulitis surgery (UCI Health, Orange County) Diverticulosis vs. diverticulitis: "According to the National Institute of Diabetes and Digestive and Kidney Diseases, about half of people age 60 and older have diverticulosis, a condition in which small pouches form in the colon. Most people with this mild condition don't have any symptoms or have only occasional cramps, bloating and constipation. Increasing dietary fiber often resolves the symptoms.
But in other cases... the pouches became inflamed or infected, a condition known as diverticulitis. Severe cases can not only cause pain and extreme discomfort, but also lead to bleeding, perforation or blockage of the colon. "Doctors are very successful in treating uncomplicated diverticulitis with antibiotics. But complicated cases almost always require surgery," says Dr. Joseph Carmichael, a UCI Health colon and rectal surgeon.
• Seeds, popcorn, and nuts in diverticulitis: fact and fiction (Frederick Gandolfo, KevinMD, 11-2-17) Excellent photographs. "We know that diverticular disease is rare in countries where fiber intake is high, and we know that when populations change to a more westernized diet (poor in fiber/rich in protein, fat and processed sugars) the rate of diverticular disease rises accordingly.... But what about the common advice of avoiding seeds, nuts, corn, and popcorn that is readily doled out by some doctors and most family members/friends as soon as they hear the words diverticulosis or diverticulitis?...Probably the best evidence we have that seeds, nuts, corn, and popcorn do not cause complications in patients with diverticular disease comes from a study published in JAMA in 2008 showing that not only was intake of nuts, seeds, popcorn, and corn NOT associated with developing diverticulitis, but in fact the opposite was true. Eating more seeds, nuts, corn, and popcorn actually seemed to be associated with LESS of a chance of developing diverticulitis!"

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Dysautomnia (POTS)

(synonyms: FD; familial dysautomnia; Hereditary Sensory and Autonomic Neuropathy, Type III (HSAN, Type III); Hereditary Sensory Neuropathy Type III; HSAN-III; HSN-III; Riley-Day Syndrome; post orthostatic tachycardia syndrome (POTS).
• Dysautonomia, Familial (National Organization for Rare Disorders's helpful explanations and links to further sources of information and help). Writes one woman who is writing a book about dysautomnia, Deborah, "Dysautonomia is often listed as the familial type, which is genetic, and strikes when children are young. But there are other dysautonomias where the automatic (autonomic) processes slow down, malfunction, and cause general havoc from head to toe. More young women are now being diagnosed with POTS, post orthostatic tachycardia syndrome, and don't realize that it is more than a heart problem, it is an assault on the entire body. POTS used to be listed on NORD when I was first diagnosed in 1994, but now there are many more resources. It is one of those "invisible chronic diseases" because I could look so healthy, while having a blood pressure of 46/30 and a body temperature of 92 degrees."
• The Dysautonomia Information Network. This site keeps growing and has great resources.
• Dysautonomia International (covers POTS and familial dysautonomia).
• Support groups, practical advice, and other resources for patients (linked on website of Dysautonomia International)
• NINDS Dysautomnia information page
• Dysautomnia Foundation: http://www.familialdysautonomia.org/

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Dyslexia

• Understanding Dyslexia and the Reading Brain in Kids (Holly Korbey, Mind/Shift, KQED, 10-1-15)
• Dyslexia (Sally E. Shaywitz, Yale Center for Dyslexia and Creativity, Scientific American, Nov. 1996) A new model of this reading disorder emphasizes defects in the language-processing rather than the visual system. It explains why some very smart people have trouble learning to read.
• What Are the Different Types of Dyslexia (Valencia Higuera, Everyday Health, 7-13-20)
• Dyslexia: An Overview (Smart Kids, Learning Disabilities) Dyslexia is the most common learning disability, affecting one’s ability to read, write, spell, or do math. Dyslexia is a result of the way the brain is wired, making it difficult to process sounds heard in spoken language. Children with dyslexia often have significant strengths, and when their learning challenges are addressed they excel in school and in life. Read the signs and symptoms at different levels of schooling.
• Dyslexia and the Brain: What Does Current Research Tell Us? (Roxanne F. Hudson, Leslie High, Stephanie Al Otaiba, Reading Rockets) The identification of a child with dyslexia is a difficult process, but there are ways that parents and teachers can learn more about the reading difficulty and support the child's learning.
• The Upside of Dyslexia (Annie Murphy Paul, Sunday Review, NY Times, 2-4-12) People with dyslexia, who have a bias in favor of the visual periphery, can rapidly take in a scene as a whole — what researchers call absorbing the “visual gist.” And in some situations, it turns out, those with dyslexia are actually the superior learners.
• Defining My Dyslexia (Blake Charlton, Opinion, NY Times, 5-22-13) Defining dyslexia based solely on its weaknesses is inaccurate and unjust, and places too grim a burden on young people receiving the diagnosis. A more precise definition of dyslexia would clearly identify the disabilities that go along with it, while recognizing the associated abilities as well.
• Words Failed, Then Saved Me (Philip Schultz, NY Times, 9-3-11) "I was well into middle age when one of my children, then in the second grade, was found to be dyslexic. I had never known the name for it, but I recognized immediately that the symptoms were also mine. When I was his age I’d already all but given up on myself....When I did finally learn to read, my teachers didn’t have much to do with it."
• Read This Before You Ever Make Fun of Comic Sans Again ( Lauren Hudgins, Narratively, via The Establishment, 3-29-17) It’s the font everyone loves to hate – there’s even a movement to ban it. But my dyslexic sister helped me see how valuable those much-maligned letters can be.
• Scientists Say Dyslexia May Not Be Neurological Disorder (David L. Wheeler, Chronicle of Higher Education, 1-22-92)
• 10 Things About Dyslexia Every Teacher Needs to Know (Nickola Wolf Nelson, We Are Teachers, 12-19-16)
• What do I need to know as a teacher? (British Dyslexia Association)
• Best Fonts for Dyslexia and Why They Work (Jill Staake, We Are Teachers, 6-29-22). Best standard fonts (available on most computers) Arial, Courier, Helvetica, Verdana. Best fonts generally: OpenDyslexic, Calibri, Trebuchet, Open Sans, Comic Sans, Tahoma, Century Gothic. What's interesting about these articles are the explanations of why they are easier to read.

Usability: Typefaces for Dyslexia. Why certain fonts -- including Myriad Pro, Lexia Readable, Tiresias (especially good for visual impairment), Verdana, Trebuchet MS, Arial, and Geneva -- are easier for many to read. If you care about this audience, follow advice in the British Dyslexia Association's Friendly Style Guide
• Fonts for Dyslexia (Dyslexic.com, British) Descriptions of Read Regular, Lexie Regular, Tiresias, Century Gothic, Calibri, Sassoon, Myriad Pro--and why these are easier to read for many people. Another site, now disappeared, listed these: Myriad Pro, Lexia Readable, Tiresias (especially good for visual impairment), Verdana, Trebuchet MS, Arial, and Geneva.
• The Myths and Truths of Dyslexia in Different Writing Systems (International Dyslexia Association)
• Dyslexia friendly style guide

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Ehlers-Danlos syndrome (EDS)

• What are the Ehlers-Danlos syndromes? (The Ehlers-Danlos Society) They are a group of connective tissue disorders that can be inherited and are varied both in how affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.
• Ehlers-Danlos syndrome (Genetics Home Reference, NIH, U.S. National Library for Medicine)
There are many more links online.
• Separated by an ocean, two people connect through gaming, similar passions and a rare disease (Athima Chansanchai, Microsoft News, 3-28-22) As a child, Megan Shaw of Scotland was always falling. She bruised easily, seemed to be accident-prone and fainted a lot. She and a teenager in the U.S.who also lived with Ehlers-Danlos connected and they star in “Beyond Xbox: A Player Like Me,” the next film in the Xbox “Beyond” series, which began with “Beyond Generations.”
• How Rebecca Yarros Packed Dragons, Magic and Steamy Sex Into a Blockbuster Fantasy (Alexandra Alter, NY Times, 11-6-23) \Yarros drew on her experience with chronic illness and life in a military family to write “Fourth Wing,” a huge best seller that spawned a spicy fantasy series. One reader, Evey Alvarez, who has had dire health complications from Ehlers-Danlos syndrome, immediately recognized Violet’s illness, and was gratified to read about a character with her condition who is also “sassy,” she said. “The representation matters.”

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Endometriosis

Epilepsy

Scroll down for Psychogenic non-epileptic seizures (PNES)

The brain, explains Dr. Mark Spitz, consists of millions of cells that are “wired” to one another to transmit sensory, motor, and processing data. “When an aura occurs,” he says, “it’s like the beginning of a fire in the brain. That fire can grow so that the person is increasingly vulnerable to stronger seizures.”

• Epilepsy (WebMD) Epilepsy is a group of related disorders characterized by a tendency for recurrent seizures. There are different types of epilepsy and seizures. Epilepsy drugs are prescribed to control seizures, and rarely surgery is necessary if medications are ineffective. Several articles here but see especially Slideshow: A Visual Guide to Epilepsy
• About Epilepsy: The Basics (Epilepsy Foundation) See links to What is epilepsy? What is a seizure? What happens during a seizure? Who gets epilepsy? What causes a seizure? What are the risk factors for epilepsy? Is epilepsy inherited? How serious are seizures? Types of seizures. Triggers of seizures. Epilepsy Hotline: 1-800-332-1000 (en espanol: 1-866-748-8008)
• Types of epilepsy syndromes (Epilepsy Foundation)
• Epilepsy: A New Definition (International League Against Epilepsy--epilepsy.com). See map of which projects ILEP members are working on, where, and why.
• Gov. Newsom maintains a discriminatory policy that impacts people with epilepsy (David Parker, Fresno Bee, 10-30-24) Gov. Newsome missed an easy opportunity to end nearly seven decades of discrimination by vetoing the repeal of an outdated 1957 law originally established to enforce California’s prohibition on drivers’ licenses being issued to anyone “who is insane or feeble-minded or an idiot, imbecile or epileptic.”

"Senate Bill 357, authored by Sen. Anthony Portantino, D-Burbank, would have finally ended California’s shameful decades-old policy that all adults and teenagers with epilepsy must be reported to the government. The failure of the legislation revealed how hard it can be to correct the mistakes of the past, especially on lesser-known issues.

"It has been 30 years since the American Academy of Neurology, American Epilepsy Society and Epilepsy Foundation of America issued a landmark statement that “there was unanimous agreement that physicians should not be required to report their patients” to the Department of Motor Vehicles. Yet California remains one of only six states that requires doctors to report patients with epilepsy to their local health office, which then shares the patient’s name and diagnosis with the DMV — whether they intend to drive or not."
• International Federation of Anti-Leprosy Associations (ILEP, WHO, list of members). See WHO's global strategy and Links and resources, including fact sheets in various languages.
• Battling Epilepsy, and Its Stigma (Aliyah Baruchin, NY Times, 2-20-07) "Fifty million people have epilepsy worldwide, and more than 2.7 million in the United States, half of them children. Especially in its intractable form, also called refractory epilepsy, the disorder — and the side effects of epilepsy medications — can cause problems in learning, memory and behavior, and indelibly alter development. It can also consume families, monopolizing their time, money and energy. Yet despite the number of people with epilepsy — the disorder affects more Americans than do Parkinson’s disease, multiple sclerosis and Lou Gehrig’s disease combined — it still carries a stigma that dates to ancient civilizations. Many patients, doctors and families say that stigma hampers care, public recognition and the ability to raise money for research." This wonderful piece brings those statistics to life in the story of one child, Nora Leitner.
• Use of These Epilepsy Meds During Pregnancy Linked to Child's Autism (Michal Ruprecht, MetPage Today, 6-1-22) Valproate not the only one associated with neurodevelopmental disorders. Physicians are still "flying completely blind" when it comes to safety of most epilepsy drugs in pregnancy.
• Implantable Devices Could Detect and Halt Epileptic Seizures (Aliyah Baruchin, Scientific American, 7-3-12) Electrical stimulation, brain "cooling" and drug-delivery devices are all being developed as antiseizure tools
• I Must Save My Child: The Axelrods, Lauren, and Epilepsy (Melissa Fay Greene, Parade, Feb. 2009) Susan Axelrod's search for help for her daughter Lauren's uncontrollable seizures. Through CURE, Susan learned of a new anti-convulsant drug called Keppra and obtained a sample. "The first day we started Lauren on the medication, her seizures subsided."

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• Fixing Diane’s Brain (Bill Donahue, Runner's World, 6-22-18) The brain, explains Dr. Mark Spitz, consists of millions of cells that are “wired” to one another to transmit sensory, motor, and processing data. “When an aura occurs,” he says, “it’s like the beginning of a fire in the brain. That fire can grow so that the person is increasingly vulnerable to stronger seizures.” Did surgically removing part of Diane Van Deren's temporal lobe transform a decent distance runner into an endurance marvel? "In 1997, Van Deren underwent a partial right temporal lobectomy. Doctors removed a portion of her brain that was the focal point of her seizures. The surgery ended her epilepsy; Van Deren hasn’t seized once since the operation. But the surgeon’s work created a blind spot in the upper left part of her vision..."She is an ultramarathoner with extraordinary limitations. In races she must cover hundreds of miles, and yet often has no idea how long she has been running—or where she is going." Brief interview Epileptic Ultra-runner Diane Van Deren Runs for Good Health on The Buzz (YouTube video, Outside TV, 11-9-11, 3:15 minutes). An unusual life.
• Epilepsy Foundation
• Shattering the epilepsy stigma ( Kyler Sanderson, Niagara Week, 3-26-14)
• A Mother and Daughter: How Epilepsy Made Us Stronger (Ayun Halliday & India Kotis, comics journalism, at Narratively, At four years old, my daughter starting shaking uncontrollably, sending us on a 14-year roller-coaster ride from sorrow to frustration to coping to control. It wasn’t until the seizures finally stopped that we both realized how much epilepsy had shaped us.
• Memoir on Temporal Lobe Epilepsy (Zachary Ernst, Inklings)
• Gupta: 'I am doubling down' on medical marijuana (Sanjay Gupta, CNN, 3-6-14) Apologizing for having previously spoken against marijuana use, Gupta writes about "emerging science that not only shows and proves what marijuana can do for the body but provides better insights into the mechanisms of marijuana in the brain, helping us better understand a plant whose benefits have been documented for thousands of years. This journey is also about a Draconian system where politics overrides science and patients are caught in the middle."
• Weed (Sanjay Gupta's documentary on medical marijuana)
• Marijuana stops child's severe seizures (Saundra Young, CNN, 8-7-13) Much good background information.

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• Treating Epilepsy Naturally : A Guide to Alternative and Adjunct Therapies by Patricia Murphy
• EPILEPSY 101-The Ultimate Guide for patients and Families (The National Epilepsy Educational Alliance, ed. Ruben Kuzniecky)

• Charlotte Figi, the Colorado girl who inspired the CBD movement, dies following illness suspected to be coronavirus (John Ingold, Colorado Sun, 4-8-2020) Charlotte had a catastrophic form of early childhood epilepsy called Dravet syndrome. "From the time she was just 3 months old, Charlotte suffered hundreds of small and large seizures a day. Pharmaceutical treatments proved ineffective, and, by the age of 5, Charlotte struggled to walk and talk and required a feeding tube. After hearing about a family in California that treated their child’s seizures with oil made from cannabis, Paige Figi began to research the possibility and soon connected with a Colorado Springs medical marijuana dispensary owner named Joel Stanley, who, along with his brothers, had helped developed a strain of cannabis rich in cannabidiol, or CBD, a non-psychoactive compound. Paige Figi said Charlotte’s seizures reduced dramatically when she began taking CBD oil, so much so that Paige weaned Charlotte off anti-epileptic pharmaceutical drugs. Charlotte soon was able to walk, play and feed herself.... Her story changed the way the public perceives marijuana."
• The Power and Pitfalls of the Popular Ketogenic Diet for Patients (Karen Weintraub, CommonHealth, WBUR, 9-7-18) "The ketogenic diet is probably the best treatment we have for epilepsy." Dr. Elizabeth Thiele, of MGH...But it presents tremendous difficulties for those who try to follow it.
• Ketogenic Diets: Treatments for Epilepsy and Other Disorders by Eric H. Kossoff, John M. Freeman, Zahava Turner, James E. Rubinstein.
• Information for Professionals (Epilepsy Foundation)
• The Man Who Wasn't There: Investigations into the Strange New Science of the Self. Anil Ananthaswamy writes about what happens when our sense of self is compromised, how our how our body feels, for example, when our narrative, autobiographic self is damaged. Among other things, he writes about ecstatic epilepsy.
• Tuberous Sclerosis Association (TSA) What is Tuberous Sclerosis Complex? TSC is a genetic disorder that cause tumors to form in various organs, primarily the brain, eyes, heart, kidneys, skin and lungs. It’s also the leading genetic cause of both epilepsy and autism

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Psychogenic non-epileptic seizures (PNES)

• Her Seizures Looked Like Epilepsy, But Her Brain Looked Fine (Jon Hamilton, Shots, NPR, 2-1-18) A psychological disorder called psychogenic non-epileptic seizures (PNES) is a surprisingly common disorder, says John Stern, who directs the epilepsy clinical program at the University of California, Los Angeles. About 1 in 3 people who come to UCLA for uncontrolled seizures don't have epilepsy. Usually, they have PNES, he says....Sometimes the seizures stop once patients learn they don't have epilepsy. But usually, Warshaw says, PNES requires years of therapy and mental health treatment. (Watch video.)
• The Truth about Psychogenic Nonepileptic Seizures Epilepsy Foundation).
• In Our Own Words: Stories of those living with, learning from and overcoming the challenges of psychogenic non-epileptic seizures (PNES) by Mary Martiros and Lorna Myers. A little-understood disease as experienced by nineteen people who have experienced it.
• FAQ: Psychogenic Nonepileptic Seizures or Events
• What Movement Disorders Are Imitators of Epilepsy? (Epilepsy Foundation) Information about Jitteriness, Hyperekplexia, Benign Myoclonus of Infancy and Shuddering Attacks, Benign Paroxysmal Tonic Upgaze, Tics, Stereotypies, Alternating Hemiplegia. And certain sleep disorders: Benign Neonatal Sleep Myoclonus, Sleep-related Rhythmic Movement Disorders, Hypnic Jerks, Parasomnias (Night Terrors, Sleep Walking, Confusional Arousals), Narcolepsy-cataplexy.

Also listed are several migraine- or migraine-equivalent disorders and psychological disorders.

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Hemophilia

• Gene Therapy for Hemophilia (Hemophilia News Today) Gene therapy for hemophilia involves using a modified virus (which does not cause disease) to introduce a copy of the gene that encodes for the clotting factor that's missing in patients. Following treatment with the virus, patients should begin producing their own clotting factor normally.
• Gene Therapy for Hemophilia (American Society of Gene + Cell Therapy Hemophilia is a genetic disease that prevents blood from clotting properly leading to prolonged internal and external bleeding. There are existing treatments for hemophilia that require lifelong administration, while gene therapy may offer a one-time treatment to address the cause of the disease.
• 4 Hemophilia Support Organizations You Should Know About (Margarida Azevedo, Hemophilia News Today, 8-3-17) How these organizations differ: National Hemophilia Foundation, Coalition for Hemophilia B, Hemophilia Federation of America, and World Federation of Hemophilia.

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Hepatitis A

• CDC issues nationwide alert about mysterious hepatitis cases in kids (Lena H. Sun and Ariana Eunjung Cha, Washington Post, 4-21-22) CDC reports an unusual cluster of serious hepatitis cases in young children for which the cause, or causes, is not known. All of the children were previously healthy, officials said, and two required liver transplants. There are no reported deaths. CDC’s alert is to notify physicians and public health authorities nationwide to be on the lookout for symptoms and report suspected cases.
• What Is Hepatitis and How Is It Contracted? (Anna Kučírková, Businss Connect, 4-24-19) Plus what the 5 types of hepatitis are and how they differ.
• Hepatitis A Races Across the Country (Laura Ungar, KHN, 8-12-19) In the wake of the opioid crisis, the highly communicable hepatitis A virus is spreading in more than half the states and making its way into the general public. Underfunded health officials are valiantly trying to fight it with vaccines. Since 2016, the virus has spawned outbreaks in at least 29 states, starting with Michigan and California. It has sickened more than 23,600 people, sent the majority to the hospital and killed more than 230. All but California’s and Utah’s outbreaks are ongoing, and experts expect to eventually see the virus seep into every state. Like a shadow, it follows the opioid epidemic, spreading mostly among drug users and the homeless. But anyone who hasn’t been vaccinated can get hepatitis A — as Akron health officials are finding out. Read about it and be attentive to hygiene.
• Hepatitis A Is Surging and Cities Don’t Have the Resources to Stop It (Lauren Weber and Alissa Scheller, HuffPost, 11-4-17) Cases have jumped 28 percent this year, and there’s a “constrained supply” of vaccine.
• Deadly Hepatitis A Outbreaks Are Exposing Crumbling U.S. Public Health Infrastructure (Lauren Weber, HuffPost, 12-28-18) Over 10,000 people in the U.S. have contracted the preventable disease this year. Hepatitis A is spreading among drug-using and homeless populations, with explosions of the disease moving from California to states such as Kentucky, West Virginia, Ohio, Indiana and Missouri. Hepatitis A inflicts what feel like severe flu symptoms: nausea, fever, dizziness, overall lethargy and jaundice. Without treatment, severe cases of hepatitis A can cause liver failure. At least 80 people have died from this outbreak. "If these large hepatitis A outbreaks were happening, for example, on college campuses, you’d probably see a different level of energy around getting resources mobilized to respond to them more comprehensively."
• How a Lack of Public Restrooms Helped Spread a Deadly Hepatitis Outbreak (Gillian Mohney, HealthLine, 9-21-17) A serious hepatitis A outbreak started in San Diego, which has had a surge in its unsheltered homeless population. It has now spread to Los Angeles.
• How creating a map drove a bigger hepatitis story (Lauren Weber, Association of Health Care Journalists, 2-13-18) While the gravity of the situation in San Diego caught national headlines for the nature of the sanitation aspect, we were the first to report the scoop that separate outbreaks were happening across the country, from Michigan to New York — they just weren't getting national media attention. This was more than just a local malfeasance turned deadly; it was a broader trend nationally among homeless and drug-using populations. HuffPost reporter, drawn by data, paints larger picture of hepatitis outbreak (Susan Heavey, Covering Health, 2-15-18) Same story, more public venue.
• In California, a housing crisis turned into a health crisis as hep A cases spread (Anna Maria Barry-Jester, The Health Divide, Center for Health Journalism, 2-26-18) The vast majority of the California cases have been among people without a home. Being without a bathroom or a place to bathe, or being forced to sleep or spend time in unsanitary conditions has a way of encouraging the spread of disease.
• Vaccine Shortage Complicates Efforts To Quell Hepatitis A Outbreaks (Stephanie O'Neill, Kaiser Health News, 11-14-17) See also Vaccines and vaccinations.

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Hepatitis C virus (HCV)

• Viral Hepatitis -- Hepatitis C information (Centers for Disease Control and Prevention) Hepatitis C is a liver infection caused by the Hepatitis C virus (HCV). Hepatitis C is a blood-borne virus. Today, most people become infected with the Hepatitis C virus by sharing needles or other equipment to inject drugs. For some people, hepatitis C is a short-term illness but for 70%–85% of people who become infected with Hepatitis C, it becomes a long-term, chronic infection. Chronic Hepatitis C is a serious disease than can result in long-term health problems, even death. The majority of infected persons might not be aware of their infection because they are not clinically ill. There is no vaccine for Hepatitis C. The best way to prevent Hepatitis C is by avoiding behaviors that can spread the disease, especially injecting drugs. Hepatitis C virus infection can last a lifetime and lead to serious liver problems, including cirrhosis (scarring of the liver) or liver cancer.
• Death Sentence (STAT News) There is a simple, outright cure for hepatitis C. But state prisons across the country are failing to save hundreds of people who die each year from the virus and related complications. A STAT investigation has found that more than 1,000 incarcerated people died from hepatitis C-related complications in the six years after a curative drug hit the market. The death rate in 2019 was double that of the broader U.S. population.
In the stories on this page, reporter Nicholas Florko documents prisons’ blatant refusal to test and treat people with the condition, even, in some cases, in the face of legal orders to do so. He introduces incarcerated people who watched their health deteriorate or lost their lives because of the rationing of hepatitis C drugs. Prisons say the medicine, even as its price drops, is too expensive for them to distribute widely. But incarcerated people are fighting back: Some have fought for the treatment in the courts and won, forcing the system to care for them and, in some cases, other incarcerated hepatitis C patients.

• Louisiana explores a new way to deal with sky-high drug prices (Julia O'Donoghue, NOLA.com/The Times Picayune, 7-25-18) The Louisiana Department of Health is working on a new strategy to expand access to a hepatitis C cure, one that involves the state agreeing to pay a drug company for medication for several years in exchange for unlimited access to treatment. If a deal is worked out, Louisiana's Health Secretary Rebekah Gee said the state would be able to make substantial progress toward eliminating hepatitis C from Louisiana. The arrangement between the state and drug companies would also likely be the first of its kind in the country.
• Hepatitis C toolkit for journalists (World Federation of Science Journalists, with background on the disease, the treatment, public policy, biology basics, and an expert database).
• Hepatitis C testing facilities (for those in U.S. with few resources and no coverage)
• Stories of Hepatitis C survivors (Story Corps and Caring Ambassadors). Listen to the stories online, collected to raise awareness of hepatitis C and to help de-stigmatize HCV+ patients, encourage the uptake of HCV screening and testing, and support those with known infection by sharing patient stories through NPR’s StoryCorps.
• If You’ve Got Hep C, Spitting Can Be A Felony (Michelle Andrews, KHN, 6-19-18) One of their goals was to reduce stigma by no longer singling out HIV, so they added hepatitis, meningococcal disease and tuberculosis to the medical conditions that people could be prosecuted for if they exposed others to it.
• Hepatitis C, a worldwide health story (World Federation of Science Journalists' toolkit for journalists)
• Hepatitis C Drug’s Lower Cost Paves Way For Medicaid, Prisons To Expand Treatment (Michelle Andrews, Kaiser Health News, 10-3-17) "The drug, Mavyret, is the first to be approved by the Food and Drug Administration that can cure all six genetic types of hepatitis C in about two months in patients who haven’t previously been treated. Other approved drugs generally require 12 weeks to treat the disease and often aren’t effective for all types of hepatitis C. In addition, Mavyret’s price tag of $26,400 for a course of treatment is significantly below that of other hepatitis C drugs whose sticker price ranges from about $55,000 to $95,000 to beat the disease. Patients and insurers often pay less, however, through negotiated insurance discounts and rebates....Hepatitis C is a viral liver infection spread through blood that affects an estimated 3.5 million people in the United States. It can take years to cause problems. Many baby boomers who contracted it decades ago before blood was screened for the virus don’t realize they have it until they develop liver disease. In addition, the growing heroin epidemic is adding to the problem as people become infected by sharing contaminated needles." An important piece to read.
• What you need to know about hepatitis C (fact sheet, National Institute of Diabetes and Digestive and Kidney Diseases, NIDDK, NIH)
• Hepatitis C FAQs for the Public (CDC)
• Hepatitis C Medications (HCV Advocate)
• HVC Advocate newsletter
• Children exposed to Hepatitis C may be missing out on treatment (Elana Gordon, Kaiser Health News, 7-28-16)
• The Realities of Hepatitis C in 2018 (Life Policy Shopper)

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HIV/AIDS

These links can get you started; dig in at these sites and find what's new.
• AIDSInfo (NIH) The latest information and resources on HIV/AIDS research, clinical trials, federal treatment guidelines, and HIV-related therapies.
• HIV Basics (Centers for Disease Control and Prevention) Basic information, fact sheets, brochures, journal articles, special reports, etc.
---Compendium of Evidence-Based Interventions and Best Practices for HIV Prevention
---Info on HIV testing

• Pre-exposure prophylaxis (or PrEP) (CDC) PrEP is when people at very high risk for HIV take HIV medicines daily to lower their chances of getting infected. This is the Center for Disease Control's informative page answering any questions you might have
• The Body (an HIV/AIDS resource) and TheBodyPro (for the HIV/AIDS workforce)
• Living with HIV/AIDS (Medline Plus)
• Ending the HIV Epidemic (CDC resources).
• Ending the HIV Epidemic: A Plan for the United States (Anthony S. Fauci, Robert R. Redfield, George Sigounas, JAMA Editorial, 2-7-19) Four pillars of the plan: Early diagnosis, early treatment, prevention for at-risk individuals with pre-exposure prophylaxis (PrEP), and rapid detection and response to emerging clusters of HIV infection

• Anthony Fauci, on retiring after a sterling career running NIAID: "Although a safe and effective HIV vaccine has not yet been developed, scientific advances led to the development of highly effective antiretroviral drugs that have transformed HIV infection from an almost-always-fatal disease to a manageable chronic disease associated with a nearly normal life expectancy. Given the lack of global equity in the accessibility of these lifesaving drugs, HIV/AIDS continues, exacting a terrible toll in morbidity and mortality, 41 years after it was first recognized. If there is any silver lining to the emergence of HIV/AIDS, it is that the disease sharply increased interest in infectious diseases among young people entering the field of medicine."
• The Last Dance with My Dad (Emily Ziff Griffin, New Yorker, 9-2-21) Before he died, of AIDS, we went on vacation.
• Americans With HIV Are Living Longer. Federal Spending Isn’t Keeping Up. (Sam Whitehead, KFF Health News, 6-17-24) Advances in medicine mean more people are living longer with HIV. But aging with HIV comes with an increased risk of health complications, and many worry the U.S. health care system isn’t prepared to treat this growing population.
• The Fight Over AIDS-Relief Program PEPFAR Could Have Far-Reaching Consequences (Mathias Hammer, Time magazine, 10-6-23) Throughout the whirlwind of activity on Capitol Hill to keep the government running, the deadline passed to reauthorize a vital global health program that’s been credited over the last two decades with saving more than 25 million lives across some 50 countries. The long-term prospects for the President’s Emergency Plan for AIDS Relief (PEPFAR)—launched in 2003 by President George W. Bush and reauthorized with broad bipartisan support in 2008, 2013, and 2018—are now uncertain.
Global health practitioners and advocates also worry that even if PEPFAR is eventually reauthorized, the uncertainty created both by Congress missing the deadline and by the fading of bipartisan support for the program could ultimately increase costs and inefficiencies as well as harm the U.S.’s diplomatic interests. Health experts and administration officials warn that non-reauthorization will erode the program's ability to purchase affordable care and weaken the U.S.'s role as a leader in global health.
• A New Shot Guards Against H.I.V., but Access for Africans Is Uncertain (Stephanie Nolen, NY Times, 9-27-22) An injection every two months rather than a daily pill could shield many more women from the virus, but it is unavailable in places that need it most. Lots of young women here start PrEP (short for pre-exposure prophylaxis). Few stay on it. The clinical trial found the injectable PrEP to be a huge success, nearly eliminating women’s risk of contracting H.I.V., and to be 88 percent more effective than the daily pill. But there’s still no sign of those injections in Soweto. See also links to additional HIV stories.
• World's first HIV-positive to HIV-positive heart transplant performed at NYC hospital (NBC News, 7-30-22) "Thanks to significant medical advances, people living with HIV are able to control the disease so well that they can now save the lives of other people living with this condition"
• California to Make HIV Prevention Drugs Available Without a Prescription (Laurel Wamsley, NPR, 10-8-19) California Gov. Gavin Newsom signed a bill othat will make HIV-prevention drugs available without a prescription. It allows pharmacists to dispense both PrEP, or preexposure prophylaxis, and PEP, post-exposure prophylaxis.
• Five Years Later, HIV-Hit Town Rebounds. But the Nation Is Slow to Heed Lessons. (Laura Ungar, KHN, 2-19-2020) Ethan Howard is now sober in a place that has new addiction treatment centers, a syringe exchange, and five times more addiction support groups than before the outbreak. The CDC deemed 220 U.S. counties vulnerable to similar outbreaks, yet fewer than a third of them have working syringe exchanges. Such programs, which make clean needles available to drug users, have been found to reduce the spread of HIV and hepatitis C. A recent Brown University study that found having a syringe exchange before the outbreak could have decreased HIV incidence there by 90%, and a study published in 2018 estimated that simply testing for and tracking HIV when hepatitis C spiked around 2010 could have kept HIV cases there below 10.
• U.S. and Needle Exchange (Norman Bauman, New Scientist) Thousands of Americans will die of AIDS because politicians refuse to believe scientists who say needle exchanges make good sense.
• Reporting on HIV and AIDS: A Primer (NLGJA New Ways) See also:
--HIV-Plus Style Guide: Reporting on People with HIV and AIDS (HIV Plus Magazine, 2015)
---The Association of LGBTQ Journalists Stylebook on Lesbian, Gay, Bisexual, Transgender and Queer Terminology (NLGJA)
• Let's Stop HIV Together (Centers for Disease Control and Prevention)
• Positively Negative: Love, Pregnancy, and Science's Surprising Victory Over HIV by Heather Boerner. ""Positively Negative reads almost like a science mystery. Boerner takes a deep-dive into a complicated topic, writing the science not only crisply and clearly, but compellingly. Boerner tells the story of two couples, each with an HIV-positive partner, who love one another so deeply that they are willing to take what seems like a risk to have a healthy baby of their own making. Positively Negative is a story of triumph, against the backdrop of medical advancement over more than a decade, that will touch readers and leave them thinking long after putting it down."~Wendy Ruderman.
• Can ending the HIV epidemic be achieved without nurses? (Jacqueline Nikpour and Michael Relf, Opinion, The Hill, 11-14-19) The Trump administration's nearly $300 million proposal to end the HIV epidemic includes connecting people to testing, increasing the distribution of the pre-exposure prophylaxis (PrEP) medication, and using data to target high-risk hotspots. But the larger issues of stigma and social factors driving the HIV epidemic remain unaddressed. Unraveling deep-seated beliefs that lead to the marginalization of individuals living with HIV requires a much more holistic approach. That’s where nurses can come in. While the Trump administration’s proposal is strong, nurse-led programs to address the stigma and the social determinants related to HIV is essential to truly ending the epidemic. Holistic care and addressing the social drivers of health and illness are what nurses do best.

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• Discouraging People from Doing PrEP Therapy (George Citroner, Healthline, 7-11-18) Truvada costs $2,000 a month. Experts say that out-of-pocket expense is preventing a lot of people from taking the PrEP treatment to prevent HIV infection. See #BreakThePatent. Gilead Sciences has inflated the cost from $6 to more than $1,600 per month, despite the US taxpayer paying for almost the full cost of its development. If we could lower the price of the drug, we could end the HIV epidemic without a vaccine. Drug companies have held the American people hostage for too long. Join the campaign to #BreakThePatent.
• The World’s First Known Person Who Naturally Beat HIV Goes Public (Bob Roehr, LeapsMag, 10-16-19) After 15 years of study, leading researchers increasingly believe that at least one person has managed to beat HIV, though the hypothesis cannot be completely verified until after her death when autopsy confirms it. Bob worked on this long story off and on for more than a decade, about a California woman's personal journey from scared patient with an HIV diagnosis in 1992 to an empowered participant in the research process. As a" long-term non-progressor, or LTNP" she was an ideal research participant and made her blood and gut (both valuable sources of research material) available to Harvard and NIH research labs.
• The 'London Patient,' Cured of H.I.V., Reveals His Identity (Apoorva Mandavilli, NY Times,3-9-2020) Last March, scientists announced that Adam Castillejo, then identified only as the “London Patient,” had been cured of H.I.V. ... The donor carried a mutation that impeded the ability of H.I.V. to enter cells, so the transplant essentially replaced Mr. Castillejo's immune system with one resistant to the virus. See also The ‘London Patient’: Five Takeaways
• CDC: Needle exchange sharply reduced sharing in an Indiana city wracked by an HIV outbreak (Laura Ungar, Louisville Courier, 3-7-18) A new federal study shows that needle sharing plummeted in Austin, Indiana after people who shoot up drugs began using a syringe exchange started in response to the largest drug-fueled HIV outbreak ever to hit rural America. "Cooke said he's glad the syringe exchange has linked more residents to medical care. Most HIV patients also have hepatitis C, and the state has a new program to help them, which allows rural doctors like him to consult remotely about cases with experts at Indiana University School of Public Health." Norman Bauman observed recently on a journalist's listserv: "But the more important question is, why did they have 181 HIV infections in the first place? A lot of the public health people criticized Governor Pence for not implementing what that BMJ article called 'Standard-of-care addiction treatment,' which includes needle exchanges. Indiana gave us a teaching model of how an IV drug epidemic predictably turned into a HCV epidemic and then into an HIV epidemic....How do you feel about spending $23,000 a year per HIV patient? How do you feel about spending $80,000 to cure a case of HCV? Where are you going to get that money? Are you going to take it out of your general hospital operating budget?" CDC figures.
• The 'London Patient' New HIV Remission Raises Hope (Heather Boerner, Medscape, 3-5-19) A London man has not had detectable HIV in his system for 18 months, despite not having received treatment during that period.The remission came after the patient underwent a stem cell transplant. This makes him the second man in history — after the Berlin patient — to have achieved HIV remission after such a transplant. Both patients had acute cancers that called for a stem cell transplant, a painful and invasive treatment used after other treatments have failed. See also First Step to Creating HIV-Resistant T Cells in Patients (Ricki Lewis, Medscape, 3-5-14) Using gene editing to mimic a mutation that prevents HIV from entering CD4 T cells appears to be safe in a small group of patients. The "Berlin patient," Timothy Brown, made the CCR5 effect famous when he was apparently cured of HIV infection after receiving bone marrow from a homozygous mutant donor to treat leukemia. Limitations of this study include the small and variable patient pool and the focus on modified cells in the vascular compartment.
• HIV InSite (University of California, San Francisco). Comprehensive information on HIV/AIDS treatment and prevention.

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• Religious Conservatives’ Ties to Trump Officials Pay Off in AIDS Policies, Funding (Marisa Taylor, KHN and WaPo, 8-22-18) Evangelical activist Shepherd Smith has spent more than three decades cultivating relationships with leading AIDS researchers and policymakers to promote abstinence-only sex education. Those connections now could influence government programs and funding within the Trump administration, signaling a resurgence of religious conservatives’ influence over health care issues well beyond abstinence education. In recent media interviews, the physician-researcher said he has rethought his opposition to promoting condom use in the fight against AIDS. He elaborated on that in a statement in July to KHN, saying he supports programs that encourage people who are not sexually active to delay sex and have fewer partners — an approach hailed by conservative activists.
• Yes, President Trump, there is a difference between HIV and HPV. Here's a handy tipsheet (Karen Kaplan, LA Times, 5-18-18) "In the early days of his presidency, Donald Trump famously declared that "nobody knew that healthcare could be so complicated." At the time, he was talking about health insurance. But perhaps he was also thinking about two potentially life-threatening viruses — HIV and HPV. In a video that came to light this week, Microsoft co-founder Bill Gates described two meetings with Trump where the men discussed a variety of issues related to innovation, science, education and global health."
• After Prison, Many People Living With HIV Go Without Treatment (Heather Boerner, Shots, NPR, 10-9-18) Boerner examined the fate of people who live without treatment for their HIV after they leave prison. In addition to providing an in-depth perspective from several experts, Boerner also tells the story of Bryan C. Jones, who had left a prison in Ohio and almost immediately ditched his HIV drugs because he knew they were no longer working. A study published in PLOS One showed that people with HIV often are lost to care once they leave the monitoring and services provided in prison. "But Jones was one of the lucky ones. A few weeks after his release, he returned to his old HIV doctor, paid for with Ryan White Care Act funds while he waited for his Medicaid to be approved." A case manager connected him to permanent housing. That "made all the difference," Jones recalls. That made it easier to take meds. Many states cancel Medicaid enrollment, requiring recently incarcerated people to navigate reapplying. Other states have extremely limited eligibility for Medicaid that might exclude adults without disabilities. If we want to control (even end) HIV/AIDS, this is clearly a group that should be targeted for Medicaid expansion.
• The Ryan White HIV/AIDS Program (Health Resources and Services Administration, or HRSA) The Ryan White HIV/AIDS Program is a federal program that provides a comprehensive system of care, including primary medical care and essential support services for people living with HIV who are uninsured or underinsured. Ryan Wayne White (1971-1990) was an American teenager from Kokomo, Indiana who became a national poster child for AIDS in the United States, after being expelled from middle school because of his infection--acquired through a tainted hemophilia treatment. Ryan White programs are "payer of last resort" which fund treatment when no other resources are available.
• The Gay Men Who Have Lived for Years With Someone Waiting on Their Death (Jack Lowery, The Atlantic, 10-4-18) At the height of the AIDS crisis, a number of Americans confronting HIV sold their life insurance for quick cash. Then lifesaving drugs came along. In a viatical settlement, the holder of a life-insurance policy names a third, unrelated party as the benefactor, in exchange for immediate cash. Brokers for viatical settlements advertised almost exclusively to people living with AIDS, and the industry quickly received a ghoulish reputation: Investing in a viatical settlement was a bet on another’s demise. An imminent death yielded a quicker return. Viatical settlements first emerged in direct response to the AIDS crisis. Then along came protease inhibitors and the odds changed. On Marketplace/NPR: How the deaths of gay men became a commodity (Kai Ryssdal and Bennett Purser, 10-15-18)
• Sexually active? Get tested. (Kathy Jean Schultz, VC Reporter, Ventura County, California, 6-13-18) Envisioning the end of HIV/AIDS may have been a premature dream. Public health experts are seeing an ominous rise in HIV infection rates. More than 20 years after widespread AIDS deaths, Ventura County HIV infection rates climb. Rising rates might in part be reflective of wider testing within the population.
• HIV Treatment (CDC)

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• Are Google and Facebook Responsible for the Medical Quackery They Host? (Michael Schulson, Undark, 6-6-18) Social media algorithms help charlatans spread autism cures, vaccine disinformation, and AIDS denialism through online videos. Who’s really to blame? The digital platforms that host such material and conversations aren’t always passive participants in the recruitment process. Their algorithms, after all, are trained to give visitors more of the kind of content that they like — whatever that might be. If you watch one AIDS denialism video on YouTube, the site suggests other denialist videos, "essentially serving up content to keep me on the site longer." Facebook works on the same principle, but is not quite as bad as YouTube.
• FDA Repays Industry by Rushing Risky Drugs to Market (Carolyn Chen, ProPublica, 6-26-18) As pharma companies underwrite three-fourths of the FDA’s budget for scientific reviews, the agency is increasingly fast-tracking expensive drugs with significant side effects and unproven health benefits.... 'Gregg Gonsalves used to be a member of ACT UP, the HIV advocacy group that tried to take over the FDA’s headquarters in Rockville, Maryland, in 1988, accusing the agency of holding back cures. While he didn’t storm the FDA building, Gonsalves participated in other protests that led the FDA to accelerate approvals. Now an assistant professor of epidemiology at Yale School of Public Health, he said he fears HIV activists “opened a Pandora’s box” that the industry and anti-regulation think tanks pounced on. “We were desperate. We naively had the idea that there were hundreds of drugs behind a velvet curtain at the FDA being held back from us,” he said. “Thirty years of our rash thinking has led us to a place where we know less and less about the drugs that we pay more and more for.”'
• Antiretroviral Therapy: What Does It Do? (NIH) Antiretroviral therapy (ART) is the daily use of a combination of HIV medicines to treat HIV. ART saves lives but does not cure HIV.
• PrEP (pre-exposure prophylaxis) (CDC) is medicine people at risk for HIV take to prevent getting HIV from sex or injection drug use. When taken as prescribed, PrEP is highly effective for preventing HIV. The CDC answers some of the most common questions about PrEP. You can also download materials to share or watch videos on the benefits of PrEP.
• HIV/AIDS and hepatitis co-infection: An emerging health issue (Evelyn P. Tomaszewski, National Association of Social Workers, 2011)
• Gilead Accused Of 'Unethical' Access Policy for an HIV Prevention Drug (Ed Silverman, Pharmalot, STAT, 1-36-18) Atrio of AIDS advocacy groups is accusing Gilead Sciences (GILD) of drastically limiting a key component of an AIDS prevention treatment in an “unethical” manner that may violate federal guidelines. At issue is a Gilead drug called Truvada, which is combined with one of two other medicines to form nPEP, or non-occupational post-exposure prophylaxis, the term used to describe preventive treatment. Observational studies suggest the combination can reduce the risk of acquiring HIV infection when started within 72 hours of exposure and continued for a month.
• NASTAD blog (National Association of State and Territorial AIDS Directors)
• Covering HIV in the modern era: What reporters need to know (Bara Vaida, Covering Health, AHCJ, 12-1-17)
• About 15 percent of Americans with HIV don't know they're infected, CDC says (Melissa Healy and Andrea K. McDaniels, Baltimore Sun, 12-1-17) The estimated number of annual HIV infections in the United States fell nearly 20 percent between 2008-2014, after remaining stable since the mid-1990s. “The sooner you get a diagnosis and get into care, the less damage that will happen to your immune system.”
• My Aunties: Lessons in love during an epidemic (an animated story by Stefan Lynch and Beth Teper, Storycorps with POV, 12-3-2010) Stefan Lynch was raised by gay parents in the early eighties. He was cared for and loved by a group of adults, largely gay men, who he called his “aunties.” Stefan remembers the succession of AIDS-related illnesses in his family, including the death of his father in ‘91. Even in the face of terrible sickness and loss, his aunties showed him how to survive and care for one another. Here's the story it was based on.

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• Sergeant Sues Defense Dept. Over ‘Outdated’ H.I.V. Policies (Dave Philipps, NY Times, 5-31-18) Army Sgt. Nick Harrison learned he was infected with H.I.V. six years ago, but the once fatal diagnosis has barely changed his routine at work or at home because he keeps the virus in check with a once-a-day pill. The only thing H.I.V. crippled was his military career. The military bars anyone with the virus that causes AIDS from joining. Policies crafted in the 1980s allow troops who contract the disease while in the military to stay as long as they remain otherwise healthy, but bars them from deploying in nearly all cases.
• San Francisco Is Changing Face of AIDS Treatment (Donald G. McNeil Jr., NY Times, 10-5-15) "Despite bad luck in sex-with-strangers roulette, Rafael did have some good fortune: He lives in San Francisco, which is turning the tide against H.I.V. and serving as a model for other cities. The city that was once the epidemic’s ground zero now has only a few hundred new cases a year, the result of a raft of creative programs that have sent infection rates plummeting."
• International AIDS Society (Founded in 1988, the International AIDS Society (IAS) is the world's largest association of HIV professionals, with members from more than 180 countries.
• Federally approved HIV/AIDS medical practice guidelines (AIDSinfo)
• NIH Office of AIDS Research (gateway to many helpful resources)
• NIH AIDS Research Information AIDS research fact sheets and updates from the Institutes and Centers leading the NIH AIDS research agenda.
• National Library of Medicine HIV/AIDS Information AIDS resources from the NIH's medical library (the world’s largest)
• PubMed (searchable resource: more than 21 million citations for biomedical literature)
• Black AIDS Institute
• IAS 2017: PrEP Use in U.S. Exceeds 100,000 in Gilead Pharmacy Survey (HIVandHepatitis.com) "The U.S. Food and Drug Administration approved Truvada for HIV prevention in July 2012. Adoption was initially slow, but by late 2013 it began to rise steeply as gay and bisexual men starting promoting PrEP within their communities. However, it is difficult to estimate the total number of people who have used PrEP because this information is not centrally collected."
• When HIV Stigma and Conscientious Objection Collide (Liz Scherer, MedPage Today, 8-4-22) A quiet academic debate over a physician's right to refuse specific healthcare services on the basis of moral or ethical objections or religious beliefs is spilling over into the HIV arena in some states, pitting some patients requesting preventive medication (preexposure prophylaxis or PrEP) against legislators and lawyers.
• To Halt HIV, Advocates Push for PrEP Outreach to Black Women (Heather Boerner, Shots, NPR, 2-8-19)
• The world's most effective HIV prevention drug hasn't lived up to its potential (Heather Boerner, WaPo, 11-3-14) The drug Truvada and the prevention approach called pre-exposure prophylaxis, or PrEP, are increasingly at the center of efforts to keep such people as Nick negative. While the Food and Drug Administration approved Truvada for PrEP in 2012, only a few thousand people currently take it, according to the drug’s maker, Gilead Sciences. The Centers for Disease Control and Prevention estimates that at least 500,000 could benefit from it.
• America’s Hidden H.I.V. Epidemic (Linda Villarosa, NY Times Magazine, 6-6-17) Why do America’s black gay and bisexual men have a higher H.I.V. rate than any country in the world?
• HIV Rates Drop Across US, but Especially in These States (Heather Boerner, Medscape, 8-8-17)
• ‘We’re in a mess.’ Why Florida is struggling with an unusually severe HIV/AIDS problem (Jon Cohen, Science, 6-13-18) "Miami is the epicenter of the epicenter of HIV/AIDS in the United States," says Mario Stevenson of the University of Miami Miller School of Medicine. In 2016, Miami had the highest new infection rate per capita of any U.S. city: 47 per 100,000 people, according to the Centers for Disease Control and Prevention (CDC)--more than twice as many as San Francisco, New York City, or Los Angeles. And more HIV infections progress to AIDS here than in any other state, in part because many infected people who start taking antiretroviral (ARV) drugs don't stick with them. A report for Miami called Getting to Zero "built on the treatment-as-prevention principle of the international Ending AIDS movement: Infected people rarely transmit the virus or develop AIDS if they know their status and take ARVs. The report urged Miami to strengthen its testing and treatment efforts—as has happened in San Francisco, New York state, and Vancouver, Canada—and it promoted a proven prevention strategy called pre-exposure prophylaxis (PrEP): giving ARVs to uninfected people who are at high risk. At the state level, the same agenda is at the heart of DOH's plan to eliminate HIV transmission and AIDS deaths, which it has rolled out, albeit slowly, over the past few years." Florida has made some progress, but "state officials have turned away federal funding for prevention and care, limited sex education, and generally downplayed the problem. The reformers say that in addition to politics, they must tiptoe around cultural minefields, slash through excessive bureaucracy, and tackle the stigma that compromises HIV/AIDS efforts everywhere." Stigma and discrimination keep people in a rural sugar-growing town from visiting the local clinic. "The push for reform also faces indifference, especially among state and local legislators."
• CDC Guide to HIV Cost-effectiveness (CDC) The purpose of this guide is to help prevention program staff and planners become more familiar with potential uses of economic evaluation.
• U.S. Still in Danger of Losing War on AIDS, C.D.C. Director Says (Donald G. McNeil Jr., Health, NY Times, 12-1-15) “Hundreds of thousands of people with diagnosed H.I.V. infection are not receiving care or antiretroviral treatment,” wrote Dr. Thomas R. Frieden, the director of the Centers for Disease Control and Prevention, and Dr. Jonathan Mermin, the agency’s chief of AIDS prevention. “These people account for most new H.I.V. transmission.” Dr. Frieden argued "for a public health approach to outweigh a strictly medical one. The difference is that a medical doctor’s first duty is to the patient, while health officials like him are charged with protecting the population at large....In 2005, he advocated H.I.V.-control measures that he said would 'offend both sides of the political establishment.' Condoms and clean syringes were needed even if conservatives disliked them, he said, and the tracing of sexual partners needed to be done even if H.I.V. activists opposed it." "Dr. Frieden expressed frustration with 'AIDS exceptionalism' — laws that made it difficult for public health authorities to treat AIDS as they might tuberculosis, syphilis or meningitis."
• How Gut Microbiota Impacts HIV Disease (Bob Roehr, Scientific American, 3-1-16) A new understanding of the role gut microbiota plays in HIV disease is beginning to emerge, suggesting potential new strategies to manage the infection. For more of his excellent pieces in Scientific American, including several on HIV/AIDS, go here.
• Guidelines for the Use of Antiretroviral Agents in HIV-1-Infected Adults and Adolescents (Clinical Guidelines Portal, AIDSInfo)

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• Dying Words: The AIDS Reporting of Jeff Schmalz and How It Transformed The New York Times by Samuel G. Freedman and Kerry Donahue
• Positively Negative: Love, Pregnancy, and Science's Surprising Victory Over HIV by Heather Boerner. "Positively Negative reads almost like a science mystery. Boerner takes a deep-dive into a complicated topic, writing the science not only crisply and clearly, but compellingly. Boerner tells the story of two couples, each with an HIV-positive partner, who love one another so deeply that they are willing to take what seems like a risk to have a healthy baby of their own making. Positively Negative is a story of triumph, against the backdrop of medical advancement over more than a decade, that will touch readers and leave them thinking long after putting it down."~ Wendy Ruderman
• Walk-In (Ingrid Forsberg, Pulse, 2-9-18) A nurse practitioner gently informs a young man that he has a sexually transmitted disease. "One of the hardest parts of working here is that I can't know what happens to these patients after they leave." But in this case she does learn.
• Mapping How The Opioid Epidemic Sparked An HIV Outbreak (Heather Boerner, New Hampshire Public Radio, 2018) Genetic data has been used to track HIV before. But now, the technology is being used to map HIV outbreaks in real time. Using genetic sequencing, they show how long the outbreak had been going on, connected people who hadn't previously been linked by traditional methods, and showed how the virus jumped from a slowly spreading infection to a virus transmitted quickly via needle sharing and other, smaller sub-epidemics.
• AIDS in the Heartland (Jacqui Banaszynski, St. Paul Pioneer Press, Summer 1987, posted on Storylines). This series was awarded the 1988 Pulitzer Prize in Feature Writing
• The Best HIV/AIDS Blogs of the Year (Valencia Higuera, HealthLine, 6-12-17)
• Mapping How the Opioid Epidemic Sparked an HIV Outbreak (Heather Boerner, Shots, Public Health, NPR, 1-14-18) Genetic data has been used to track HIV before. But now, the technology is being used to map HIV outbreaks in real time, lending molecular weight to the in-person interviews that public health officials have used for centuries to track and stop outbreaks. The Austin reconstruction is an example of what it can do....the CDC decided to use the same kind of molecular sleuthing that ferreted out Dugas's real place in the epidemic, and layer those results over the data health workers collected in interviews. The idea was that they'd test it on the Indiana outbreak first, and then offer the technology, which uses multiple programs and takes partner interviews into account, for free to public health departments across the country....At each step in this outbreak, officials could have intervened without the DNA map, Cooke says. If that early person with HIV were able to access treatment, the risk of transmitting the virus in the first place would have been negligible. If there had been a syringe access program, there would have been less needle sharing and even injecting drugs wouldn't have transmitted the virus. If there was adequate mental health care, people might deal with childhood traumas differently. If addiction treatment were more readily available, if HIV prevention tools like Truvada were available everywhere — all of these could have deescalated the outbreak, he says."
• The Last Dance with My Dad (Emily Ziff Griffin, New Yorker, 9-2-21) Before he died, of AIDS, we went on vacation.

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Huntington's disease

• Huntington's Disease Society of America (HDSA)
• Huntington's spreads like 'fire in the brain.' Scientists say they've found the spark (Jon Hamilton, All Things Considered, 6-19-23) Diseases like Alzheimer's, Parkinson's, and Huntington's are caused by toxic clumps of proteins that spread through the brain like a forest fire. Now scientists say they've figured out how the fire starts in at least one of these diseases. They've also shown how it can be extinguished. "What starts this little forest fire in the brain is a single molecule of PolyQ."
---Pathologic polyglutamine aggregation begins with a self-poisoning polymer crystal (eLifesciences reviewed preprint) Amyloids are highly ordered protein aggregates with self-templating activity. This activity drives the progression of multiple incurable diseases of aging, such as Alzheimer’s (Chiti and Dobson, 2017Huang et al., 2019). Understanding how amyloids start, or nucleate, is therefore fundamental to preventing these diseases.
• Huntington's Disease (National Institute of Neurological Disorders and Stroke)
• Alice Wexler's book is a must-read: Mapping Fate: A Memoir of Family, Risk, and Genetic Research (on Huntington's Disease)
• Dr. Gilmer and Mr. Hyde (This American Life ep. 492, 4-12-13). Dr. Benjamin Gilmer (left) gets a job at a rural clinic. He finds out he’s replaced someone — also named Dr. Gilmer (picture) — who went to prison after killing his own father. But the more Benjamin’s patients talk about the other Dr. Gilmer, the more confused he becomes. Everyone loved the old Dr. Gilmer. So Benjamin starts digging around, trying to understand how a good man can seemingly turn bad. Turns out he has Huntington's, which explains a few things. Read the transcript.

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Fungal infections and disease

Including Candida auris, ringworm, Valley fever, Cryptococcal meningitis, nail fungus

• Deadly Fungi Are the Newest Emerging Microbe Threat All Over the World (Maryn McKenna, Scientific American, 6-1-21) These pathogens already kill 1.6 million people every year, and we have few defenses against them. Candida auris lurks in hospitals, where it infects patients with impaired immune systems. 75,000 people in the U.S. are hospitalized by fungi every year; 8.9 million are seen as outpatients
• Fungal infections are next chapter in reporting on superbugs (Bara Vaida,Covering Health, AHCJ, 5-16-22) Hospital overuse of antibiotics, especially during the first year of the pandemic when there were few options for treating patients, plus the use of steroids to treat lung inflammation caused by COVID-19, both contributed to increases in resistant fungal infections with high mortality rates. These infections often go undiagnosed and there is no national public health surveillance of common fungal infections, according to the CDC. Globally, about 13.5 million severe fungal infections — and 1.6 million deaths — are reported annually to public health officials, according to the nonprofit Global Action for Fungal Infections.
• Nursing Homes Are a Breeding-Ground for a Fatal Fungus (Matt Richtel and Andrew Jacobs, NY Times, 9-11-19) Candida auris, a highly contagious, drug-resistant fungus that has infected nearly 800 people since it arrived in the United States four years ago, with half of patients dying within 90 days. Drug-resistant germs of all types thrive in settings where severely ill and ventilated patients are prone to infection and often take multiple antibiotics, which can spur drug resistance. Nursing facilities and long-term hospitals are a dangerously weak link in the health care system, often understaffed and ill-equipped to enforce rigorous infection control, yet continuously cycling infected patients, or those who carry the germ, into hospitals and back again.
• Fungal infections (Medline Plus, various links, medically reliable)
• Nail Fungus (Mayo Clinic)
• Fungal Diseases (Centers for Disease Control and Prevention--CDC)
• Educational materials (CDC
• Why are fungal diseases a public health issue? (CDC)
• Candida auris: A Drug-resistant Germ That Spreads in Healthcare Facilities (CDC Fact Sheet)
• Valley Fever (Valley fever, or coccidioidomycosis, and the Expanding Geographic Range of Coccidioides (CDC)
• Facts About Valley Fever (CDC, PDF)
• Cryptococcal meningitis: A Deadly Fungal Disease Among People Living With HIV/AIDS (CDC, one-page PDF)
• Ringworm (PDF, CDC) Protect yourself from itchy rashes (which you can get from locker rooms) Also called "athlete's foot" and "jock itch."
• Home Remedies for Fungal Infections (try at your own risk!)
• 10 Home Remedies for Toenail Fungus (onychomycosis) (try at your own risk!) (HealthLine) Read about "home remedies" (check with your doctor first?) using Vicks VapoRub, Snakeroot extract, tea tree oil, oregano oil, olive leaf extract, ozonized oils, vinegar, Listerine, garlic. Or change your diet, and/or see a doctor.

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GERD & Laryngopharyngeal Reflux

• The Laryngopharyngeal Reflux (LPR) and GERD Support Group! (Facebook group)
• GERD and Laryngopharyngeal Reflux (Allegheny Health Network) Gastroesophageal reflux disease (GERD) is a chronic digestive disease caused by a weakness in the lower esophageal sphincter, a muscle between the esophagus and stomach. When this muscle is stretched out, it allows stomach acid to creep back into the esophagus. This causes acid reflux, also known as heartburn, indigestion, and regurgitation.
• Laryngopharyngeal Reflux (LPR) (Cleveland Clinic)
• GERD and LPR (ENT Hearing and balance, swallowing and speech, breathing and sleep issues, allergies and sinuses, head and neck cancer, skin disorders, even facial plastic surgery are just some of the conditions that “ENT” (ear, nose, and throat) specialists treat. Professionally, ENT specialists are called “otolaryngologists” (pronounced: oh/toe/lair/in/goll/oh/jists), but it’s easier just to say “ENT.”Health)

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Gerstmann-Sträussler-Scheinker disease

Gerstmann-Sträussler-Scheinker disease GSS is a type of prion disease. (GARD, NIH)
"The main feature of GSS is a progressive degeneration of the cerebellum (a part of the brain that controls coordination, balance, equilibrium and muscle tone), as well as different degrees of dementia. Signs and symptoms generally develop between ages 35 and 50 years and may include weakness in the legs, poor reflexes, abnormal sensations, progressive ataxia, cognitive dysfunction, slurred speech, and spasticity. On average, people affected by GSS survive approximately 60 months (range 2 to 10 years) following diagnosis."
• Mercies in Disguise: A Story of Hope, a Family's Genetic Destiny, and the Science That Rescued Them by Gina Kolata (see Times review: Life with a Rare Genetic Disease: The Science, the Suffering and the Hope. "The Baxleys, longstanding pillars of Hartsville, S.C. Bill, the pater familias and a chemical engineer, is increasingly bewildered by simple tasks like opening a package of crackers...Kolata takes a couple of detours into the history of the competitive quest to understand how these adult-onset diseases are caused by infectious proteins that start with a mutated gene and how they leave patients’ brains riddled with microscopic holes. These excursions are a useful reminder of both the ego-driven ambitions that so often propel scientific discovery (in this case, the payoff was two Nobel Prizes) and how remote such discoveries usually are from the development of effective treatments."

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Giant cell arteritis

• Giant cell arteritis (GCA) (American College of Rheumatology) is a disease of blood vessels, which may occur together with polymyalgia rheumatica. GCA occurs only in older adults, mainly those over age of 50, and can cause swelling and thickening of the small artery under the skin called the temporal artery. Common symptoms include a new, persisting headache (especially if together with flu-like symptoms), unexplained fatigue (tiredness) or unexplained fevers, difficulty chewing or pain in the jaw with chewing. Ccan occur together with a joint pain condition called polymyalgia rheumatica (also called PMR). Symptoms promptly improve with corticosteroids.
• Giant cell arteritis (Mayo Clinic) is "an inflammation of the lining of your arteries. Most often, it affects the arteries in your head, especially those in your temples. For this reason, giant cell arteritis is sometimes called temporal arteritis. Giant cell arteritis frequently causes headaches, scalp tenderness, jaw pain and vision problems. Untreated, it can lead to blindness."

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Glaucoma

• Glaucoma, Facts About (National Eye Institute, NIH)
• What Is Glaucoma? (Kierstan Boyd, American Academy of Ophthalmology)
• Glaucoma (Wikipedia). I don't often link to Wikipedia entries, but this one covers a lot of bases and links to other resources.

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Gout

• Gout--also called Gouty Arthritis (MedlinePlus) Gout is a common type of inflammatory arthritis. It causes pain, swelling, and redness in one or more joints. It usually happens as a flare, which can last for a week or two and then gets better. The flares often begin in your big toe or a lower limb. Useful answers to common questions: What is gout? What causes it? Who is more likely to get it? What are the symptoms of gout? How is gout diagnosed? What are the treatments for gout? • RA: Still a Clinical Diagnosis (MedPage Today) Toward bottom: "Gout and pseudogout also can be differentiated from rheumatoid arthritis by the location of the symptoms. Gout, characterized by the deposition of uric acid crystals, usually involves the first joint of the big toe, while pseudogout, with deposition of calcium pyrophosphate crystals, usually presents in the knee, where calcifications can be seen on x-rays."
• The Gout Show (Creakyjoints.org) A podcast series about one of the oldest – and most sorely misunderstood – health conditions.
• You don’t know Pain, until you know Gout Pain. (Mad Ogre) Lots of first-hand experience and advice. For example, Drink water. With Lemon Juice in it.

Don’t drink ANYTHING with High Fructose Corn Syrup.

Avoid red meats, fatty fish like Sushi Grade Tuna, Shrimp, and anything made from Swine. Bacon, Ham, Pork Loin, or London Broil, Prime Rib...

Develop a taste for Salads.
• Gout: Symptoms, Causes, and Treatments (Healthline) Scroll down to and click on Gout pictures (ouch).

Some home remedies may help lower uric acid levels and prevent gout attacks. The following foods and drinks have been suggested as gout remedies (tart cherries, magnesium, ginger, diluted apple cider vinegar, celery, nettle tea, dandelion, milk thistle seeds)

"Drugs to relieve gout pain include: nonsteroidal anti-inflammatory drugs (NSAIDs), such as aspirin (Bufferin), ibuprofen (Advil, Motrin), and naproxen (Aleve); colchicine (Colcrys, Mitigare), and corticosteroids.

"Drugs that prevent gout attacks include: xanthine oxidase inhibitors, such as allopurinol (Lopurin, Zyloprim) and febuxostat (Uloric)

and probenecid (Probalan)."

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Graves' disease

• Graves' disease (Mayo Clinic)
• Graves’ Disease (American Thyroid Association)
• Graves' disease (WomensHealth.gov) is an autoimmune disease that damages the thyroid gland. It is the most common cause of hyperthyroidism (overactive thyroid gland) and affects more women than men.
• Wendy Williams' Battle With Graves' Disease (Michele R. Berman and Mark S. Boguski, Medpage Today, 2-14-19)
• Hyperthyroidism and Graves’ Disease (University of Michigan Medicine)

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Guillain-Barré syndrome

• Guillain-Barré syndrome (Mayo Clinic) Pronounced gwee-YAHN-BEH-ree. Symptoms and causes, possible triggers, diagnosis and treatment.
• Guillain-Barré syndrome fact sheet (National Institute of Neurological Disorders and Stroke) Guillain-Barré syndrome (GBS) is a rare neurological disorder in which the body's immune system mistakenly attacks part of its peripheral nervous system—the network of nerves located outside of the brain and spinal cord. GBS can range from a very mild case with brief weakness to nearly devastating paralysis, leaving the person unable to breathe independently.
• Ain't Dead Yet (video) Danny Freeman talks with Sam Uhl about his wrestling match with Guillain-Barré syndrome. Read about Danny Freeman on his near-death experience and paralysis (Mike Conley, McDowell News, 9-8-19)
• Guillain-Barré Syndrome: A Clinical Study of Twenty Children (Maneesh Kumar, Shrikiran Aroor, [...], and Sandeep Kumar, Journal of Clinical and Diagnostic Research, Jan. 2015) Conclusion: "Male preponderance and presence of antecedent illness in a majority of subjects was observed in our study. Regardless of the severity of illness at admission and electrophysiological subtypes, a majority achieved full recovery. Intravenous Immunoglobulin and supportive care form the cornerstone of management in childhood GBS."
• What Is Guillain-Barre Syndrome? (WebMD) "GBS usually lasts between 14 and 30 days. If your symptoms continue longer, you may be suffering from a chronic form of GBS called chronic inflammatory demyelinating polyneuropathy and will need more aggressive treatment."

Hashimoto's disease, thyroiditis, and autoimmune diseases

• Hashimoto's disease fact sheet (Women's Health). See also Autoimmune diseases fact sheet
• How the Thyroid Gland Mystifies Doctors and Patients (Oona Tempest and Andy Miller, KFF Health News, 11-27-23) This illustrated report adapted from a KFF Health News article, Andy Miller's Many Autoimmune Disease Patients Struggle With Diagnosis, Costs, Inattentive Care "There’s no cure for Hashimoto’s or hypothyroidism. But VanOrden, who lives in Athens, Texas, started taking levothyroxine, a much-prescribed synthetic thyroid hormone used to treat common symptoms, like fatigue, weight gain, hair loss, and sensitivity to cold. Most patients do well on levothyroxine and their symptoms resolve. Yet for others, like VanOrden, the drug is not as effective. For her, that meant floating from doctor to doctor, test to test, and treatment to treatment, spending about $5,000 a year. Miller interviewed endocrinologists who treat hypothyroidism and several patients who live with it. Their stories revealed how mystifying thyroid and autoimmune conditions can be.
• The 5 Stages of Hashimoto’s Thyroiditis (Dr. Izabella Wentz, Thyroid Pharmacist, 4-8-17). See also Dr. Wentz's You can prevent Hashimoto's
• Hashimoto's Thyroiditis (WebMD on causes, symptoms, treatments)
• Leaky Gut: The missing piece in many Autoimmune Diseases, like Hashimoto’s Thyroiditis (Jill Carnahan, MD, on Hypothyroid Mom blog, 4-23-15) Hyperpermeability or “leaky gut” syndrome is the name given to a very common disorder in which the cells lining the intestines become “leaky” due to inflammation. The abnormally large spaces present between the cells of the gut wall allow the entry of toxic material into the bloodstream that would normally be eliminated.
• Hashimoto's Thyroiditis (WebMD on causes, symptoms, treatments)
• What’s Wrong with Me? (Meghan O’Rourke, Personal History, New Yorker, 8-26-13)"My thyroid was being attacked by my immune system—a disease known as autoimmune thyroiditis, though people refer to this form of it as Hashimoto's." "I had an autoimmune disease. What I had wasn’t just an illness now; it was an identity, a membership in a peculiarly demanding sect....If this were a different kind of disease, its story might follow a neat arc, from diagnosis to recovery. But the nature of autoimmune disease is to attack in cycles, to “flare.” ...Even after diagnosis, you’re often trapped in an epistemological maze, not least because autoimmune diseases tend to overlap."

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Human papillomavirus (HPV)

• About HPV (CDC) HPV, or human papillomavirus, is a common virus that can lead to 6 types of cancers later in life. You can protect your child from ever developing these cancers with the HPV vaccine at ages 11–12. HPV is spread through intimate skin-to-skin contact. You can get HPV by having vaginal, anal, or oral sex with someone who has the virus. CDC Fact Sheet that answers many common questions. HPV is a different virus than HIV and HSV (herpes). 79 million Americans, most in their late teens and early 20s, are infected with HPV. There are many different types of HPV. Some types can cause health problems including genital warts and cancers. But there are vaccines that can stop these health problems from happening.
• Link between HPV and cancer (Bara Vaida and Mary Otto, Covering Health, AHCJ, 3-25-2020) HPV causes an estimated 14 million new infections each year. It is the most prevalent sexually transmitted virus in the US. While most HPV infections remain asymptomatic and clear up on their own, some infections can progress into precancerous lesions and, eventually, cancer--typically in the cervix, vagina, vulva, penis, anus, rectum, the mouth and throat. Patients from minority groups and those with a lower socioeconomic status are less likely to receive oral cancer screenings from their dentists than patients who are white and more affluent.
• A single-dose HPV vaccine would have a big impact on cancer prevention (Ronald A. DePinho, STAT, 2-24-2020) "Up to half of cancers are preventable — they never have to occur. While cancer typically afflicts older individuals, most of cancer’s instigators plant their seeds during childhood. That means decisive action early in life can prevent cancer-related suffering and death for countless individuals as adults."
• Oropharyngeal cancer, which affects the mouth, throat and neck, is now the most common HPV-associated cancer, surpassing cervical cancer.
• What you need to know about HPV vaccines

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Huntington's disease

• Huntington's Disease Society of America (HDSA)
• Huntington's Disease (National Institute of Neurological Disorders and Stroke)
• Alice Wexler's book is a must-read: Mapping Fate: A Memoir of Family, Risk, and Genetic Research (on Huntington's Disease)
• Dr. Gilmer and Mr. Hyde (This American Life ep. 492, 4-12-13). Dr. Benjamin Gilmer (left) gets a job at a rural clinic. He finds out he’s replaced someone — also named Dr. Gilmer (picture) — who went to prison after killing his own father. But the more Benjamin’s patients talk about the other Dr. Gilmer, the more confused he becomes. Everyone loved the old Dr. Gilmer. So Benjamin starts digging around, trying to understand how a good man can seemingly turn bad. Turns out he has Huntington's, which explains a few things. Read the transcript.

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Invisible chronic illness (ICI)
including ADHD, autoimmune diseases, chronic fatigue syndrome (CFS), diabetes, fibromyalgia, rheumatic arthritis

• The ICI Experience, a blog about all aspects of the experience of living with Invisible Chronic Illness (ICI).
• Coping with invisible chronic illness (including ADHD, autoimmune diseases, chronic fatigue syndrome (CFS), diabetes, fibromyalgia, rheumatic arthritis)
• Books about how to cope with chronic or invisible illnesses
• Invisible IllnessAwareness Conference (September 2011, virtual conference, listen to on-demand episodes online)
• On-Demand episodes from Invisible Illness conference (Blogtalk radio)
• Donague, Paul H., and Mary Elizabeth Siegel. Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness
• Invisible Disabilities Association spreads awareness about illness, pain, injury and disabilities
• Overcoming Self Defeating Behaviors When You are Chronically Ill (Invisible Illnesses conference, 2008)

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Kidney disease, kidney failure,
dialysis, and kidney transplants

• Kidney Disease, A-Z
• Taco Bowls and Chicken Curry: Medi-Cal Delivers Ready Meals in Grand Health Care Experiment (Heidi de Marco and Angela Hart, KHn, 6-1-22) “Before he was diagnosed with renal disease, he was eating a diet high in iron-rich foods that are typical for us to eat, like lentils and beans, but not good for kidney disease,” said his 29-year-old daughter, Maria Cruz. “We were giving him poison.” Studies have shown that providing meal delivery services helps reduce health care costs. Participating in the program would alleviate the guesswork for his wife and daughter. But even though his conditions would qualify him for meal delivery, it’s up to the insurer to enroll him.
• Planning for Emergencies - A Guide for People with Chronic Kidney Disease (PDF, National Kidney Foundation)
• Renal Support Network (a nonprofit organization that provides non-medical services to those affected by chronic kidney disease--CKD). Call its Hopeline, 1(800) 579-1970 M-F from 10-4pm (PT) to talk to a person who has lived with kidney disease.
• National Kidney Foundation (learn about causes and symptoms of chronic kidney disease, or CKD, and glomerular filtration rate (GFR)
• The Kidney Transplant Ecosystem Is Ripe for Reform (Benjamin Hippen and Thao Pascual, MDs, MedPage Today, 10-11-22) Here are the policies and payment systems that need to change.
• Silent killer on the rise: Kidney disease is now more common than diabetes. (Consumer Reports 3-08), and How to Read Your Urine (Consumer Reports)
• Falcon, a clinical study in PKD
• Dialysis Compare
• Learning to Say No to Dialysis (Paula Span, New Old Age, NY Times, 3-27-15) Some older adults with advanced kidney failure are resisting the usual answer by deciding the sacrifices required by the treatment aren't worth the extra months of life. “Nobody tells them, ‘You could have up to two years without the treatment, without the discomfort, with greater independence.’”
• A ‘No-Brainer’? Calls Grow For Medicare To Cover Anti-Rejection Drugs After Kidney Transplant (JoNel Aleccia, KHN, 7-17-19) For nearly a half-century, Medicare has covered patients, regardless of age, who have end-stage renal disease, including paying the costs of kidney transplants and related care, which run about $100,000 per patient. But coverage ends after 36 months for those younger than 65 who don’t otherwise qualify for the program — and that includes payment for the vital immunosuppressive drugs that cost thousands per patient each month. A dollars-and-cents-and-sense discussion of alternatives.
• First Kidney Failure, Then A $540,842 Bill For Dialysis (Jenny Gold, Bill of the Month, KHN, 7-25-19) Sovereign Valentine, a personal trainer in Plains, Mont., needs dialysis for his end-stage renal disease. When he first started dialysis treatments, Fresenius Kidney Care clinic in Missoula charged $13,867.74 per session, or about 59 times the $235 Medicare pays for a dialysis session. As the dominant providers of dialysis care in the U.S., Fresenius and DaVita together form what health economists call a “duopoly.” They can demand extraordinary prices for the lifesaving treatment they dispense — especially when they are not in a patient’s network. A 1973 law allows all patients with end-stage renal disease like Sov to join Medicare, even if they’re younger than 65 — but only after a 90-day waiting period. During that time, patients are extremely vulnerable, medically and financially. Before finding a dialysis clinic in their insurance network, the Valentines were charged more than half a million dollars for 14 weeks of the treatment.
• John Oliver on kidney dialysis, Taco Bell and death (Amy B. Wang, WaPo, 5-15-15) "Oliver explained dialysis as a process in which a person is hooked up to a machine that removes blood out of the body, cleans it, then returns it to circulation. 'Think of it as a Brita pitcher for your blood,' he said. And he urged people to learn about the for-profit dialysis industry....The United States 'continues to have one of the industrialized world's highest mortality rates for dialysis care” despite spending more on it than other nations, by some accounts....Oliver recounted the history of how the country's for-profit dialysis industry came to be — the result, he said, of good intentions mixed with 'bad incentives, poor oversight and profiteering.'...Two large companies own 70 percent of these clinics, Oliver noted: Fresenius Medical Care and DaVita....Because federal guidelines do not require doctors to be on site at for-profit dialysis clinics, DaVita patients often reported feeling rushed, with employees allegedly cutting corners for the sake of speed.
• 3 points on dialysis John Oliver forgot to make (physician Katherine Kwon, KevinMD, 6-15-17) 91) Cutting costs in one area leads to higher costs in others. "Patients wind up in the hospital and undergo expensive procedures all the time because they can’t afford the prevention. Medicare covers the hospital stay, but not the treatments that keeps the patient out of the hospital. It’s crazy making. Kidney transplants save the government money." (2) Bad oversight leads to waste of resources without improving outcomes. (3) The current dialysis payment scheme has significant disadvantages built in. For example, "Medication costs are a big portion of the dialysis expense. This drives consolidation because larger dialysis companies can negotiate better drug prices. But Medicare, the biggest purchaser of medications, is legally prohibited from negotiating lower drug prices. We squeeze the providers while allowing the drug companies to keep their lavish profits." But there's more.
• In Dialysis, Life-Saving Care at Great Risk and Cost (Robin Fields, Lisa Schwartz, and Guido Romeo, Pro Publica investigation, 11-9-10) In 1972, after a month of deliberation, Congress launched the nation's most ambitious experiment in universal health care: a change to the Social Security Act that granted comprehensive coverage under Medicare to virtually anyone diagnosed with kidney failure, regardless of age or income....But although dialysis is a lifeline for almost 400,000 Americans, few outside this insular world have probed why a program with such compassionate aims produces such troubling outcomes....Neither government controls nor market forces have kept costs from ballooning or ensured the highest-quality care. Almost every key assumption about how the program would unfold has proved wrong. Must-read article about the economics and quality problems associated with dialysis in the U.S.
• Medicaid Won The Midterms. Here’s Why That Could Save Lives (Amal Trivedi and Benjamin Sommers, CommonHealth, WBUR, 11-8-18) "Under the Affordable Care Act, 32 states and Washington, D.C., have thus far expanded Medicaid, leading to coverage for more than 15 million low-income adults. On Tuesday, Idaho, Nebraska and Utah voted via ballot referenda to expand Medicaid, with as many as 300,000 residents in these states poised to gain coverage.The Medicaid expansion makes things much simpler: Any American with an income below 138 percent of the federal poverty level — roughly $35,000 for a family of four — can qualify.... economic analysis reveals that Medicaid expansion is cost-effective, an investment with a better health return than many other policy changes. Overall, our study shows that the health effects of insurance coverage are likely to be concentrated among individuals with serious chronic illnesses, like those with kidney failure....Our calculations suggest that for every 17 individuals with end-stage kidney failure gaining Medicaid coverage, one life was saved each year."
• Dialysis from the sharp end of the needle (Bill Peckham's blog, tracking industry news and trends, in advocacy, reimbursement, politics and the provision of dialysis)
• What treatments are available for kidney failure? Part of Coping Effectively: A to Z Guide for Patients and their Families (National Kidney Foundation).
• Texas Judge Upends Effort To Limit Charity Funding For Kidney Care (Michelle Andrews, Shots, NPR, and Kaiser Health News, 2-14-17) Who pays for dialysis is a big public policy issue, and whether it should be covered by federal health insurance or provided privately. "Sixty percent of the people who receive premium assistance from the American Kidney Fund get help with their Medicare or Medigap plans rather than marketplace or other private coverage, said LaVarne Burton, the president and CEO. Even though the judge's order doesn't apply to people in public plans, she hopes it will discourage insurers that are increasingly erecting barriers to third-party payment."
• Part 1: 'Survival of the savviest" (Josephine Marcotty, StarTribune, 9-30-09, updated--an excellent series on organ donation). Kidney disease has hit crisis stage, and demand for organs is exploding. Melissa Larson's life is defined by the prison of dialysis. In the free-for-all search for a living kidney donor, Melissa Larson is on her own.
• The Kidney: A body's filter ( Eddie Thomas, 9-28-09) An interactive graphic that looks at how kidney's work to remove toxins and water from the blood
• The wait for a kidney gets longer every year. The number of Americans waiting on the national kidney registry has exploded since 1989, the result of an epidemic of kidney disease and breakthroughs in transplant medicine. Today, the average wait is five years.
• Texas Judge Upends Effort To Limit Charity Funding For Kidney Care (Michelle Andrews, NPR Shots, 2-14-17) A federal judge issued a preliminary injunction barring the government from enforcing a rule allowing insurers to refuse to insure dialysis if the patient turns to a charity for financial assistance to cover his health insurance costs.
• Coalition for Supportive Care of Kidney Patients.
• Disparities found in hospice care among older dialysis patients (Liz Seegert, Health Journalism, AHCJ, 11-20-15)
• What I need to know about Eating and Diabetes (The National Institute of Diabetes and Digestive and Kidney Diseases --NIDDK)

Polycystic kidney disease (PKD)

PKD is the world's most common inherited kidney disease. ... In PKD, fluid-filled benign cysts develop and grow in the kidneys, causing the kidney to enlarge. The two inherited forms of PKD are autosomal dominant and autosomal recessive.
• Polycystic kidney disease (MedlinePlus) In brief: Causes, symptoms, exams and tests, treatment, support groups, outlook (prognosis), possible complications, when to contact a medical professional. Currently, no treatment can prevent the cysts from forming or enlarging.
• Autosomal Dominant Polycystic Kidney Disease (ADPKD) (Merck Manual) "Symptoms and signs include flank and abdominal pain, hematuria, and hypertension. Diagnosis is by CT or ultrasonography. Treatment is symptomatic before renal failure and with dialysis or transplantation afterward."
• The Polycystic Kidney Disease Research Resource Consortium (PKD RRC) develops and shares investigative resources, reagents and expertise with the broader research community to accelerate innovation and discovery in the field of polycystic kidney disease.
• New drug delivery system may open up treatments for polycystic kidney disease (Catherine Paddock, Medical News Today, 6-26-15) Researchers who found a way to reach the growth factors that promote cyst growth in polycystic kidney disease suggest it opens the possibility for repurposing a large number of existing drugs to treat the genetic disorder. In PKD, the growth factors that drive cyst growth are locked inside the fluid-filled lumen - the central cavity of the cyst - which IgG antibodies cannot enter. The study shows IgA can enter PKD cysts and stay there. Tested only in mouse models at this date.
• Living with PKD (PKD Foundation)
• PKD Foundation's Twitter page
• Finding Hope (YouTube, Part 1, PKD Foundation). See also part 2 of the Weissman family story and Part 3. "This disease feeds off stress." The PKD Foundation and the researchers it funds give them hope and information (such as links to the right doctors).
• The Anatomy of the Kidney (video, David A. Baron, for PKD Foundation) Dr. Baron discusses the structure and function of our kidneys and how they keep us hydrated and healthy. One of several in a series of Webinar Wednesdays, also viewable online. See also Basic Function of the Kidneys (basically about the normal, smooth kidney, which is about the size of a fist in an adult), Regeneratve Medicine,Total Kidney Volume (TKV); What it means for patients with PKD,
The Emotional Toll of PKD (Margot Troutt-Keys and Alexis Denny).

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Lead poisoning

• How local media coverage is forcing Cleveland to try to finally fix its lead problem (Erica Berry, Columbia Journalism Review, 2-9-16) This piece provided leads to the following resources.
• Toxic Neglect: Curing Cleveland's legacy of lead poisoning (Rachel Dissell, Brie Zeltner, The Plain Dealer, 10-20-15). A twenty-part series on the region’s mishandling of the persistent lead problem, and what could be done to fix it. See especially Even low levels of lead poisoning have a big impact on health of kids: Toxic Neglect
• Lead: America's Real Criminal Element (Kevin Drum, Mother Jones, Jan.-Feb. 2013) New research finds lead the hidden villain behind violent crime, lower IQs, and even the ADHD epidemic. And fixing the problem is a lot cheaper than doing nothing.
• How Flint water crisis emerged
• This is how toxic Flint’s water really is (Christopher Ingraham, Washington Post, 1-15-16)
• Lead: Crisis Abandoned (IdeaStream's excellent series, including In Cleveland, Lead Removal Is Less About Water And More About Old Buildings and New Legislation Aims To Alert Communities Faster When Lead Threat Emerges. Nick Castele's digital maps show lead's uneven distribution in the community, and highlight its association with infant mortality and poverty rates.
• Untold cities across America have higher rates of lead poisoning than Flint (Yanan Wang, Wash Post, 2-4-16)
• Our Children At Risk: The Five Worst Environmental Threats to Their Health. Chapter 3, Lead. (Natural Resources Defense Council, Nov. 1997). Here's table of contents. The threats: lead, air pollution, pesticides, environmental tobacco smoke, contaminated drinking water.
• Educational Innovations for Children Affected by Lead (CDC 2015)
• Looney Gas and Lead Poisoning: A Short, Sad History (Deborah Blum, Science, then Wired, 1-5-13).
• Lead Poisoning and the Middle Class: The Silent Epidemic That Doesn't Discriminate (Lynne Peeples, Huff Post, 3-15-13)
• Deceit and Denial: The Deadly Politics of Industrial Pollution by Gerald Markowitz and David Rosner
• Lead Safe America Foundation, producers of the film MisLEAD America: America's Secret Epidemic

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Lupus

Lymphedema

• What Is Lymphedema? (American Cancer Society's useful explanation) Lymphedema is a build-up of lymph fluid in the fatty tissues just under your skin. This build-up might cause swelling and discomfort. It often happens in the arms or legs, but can also happen in the face, neck, trunk, abdomen (belly), or genitals. It's important to know that lymphedema can sometimes become severe and cause serious problems, and often is a long-term or chronic condition. This is why early and careful management is needed to help reduce symptoms and keep it from getting worse.
• Lymphedema Blogs and Communities (Bright Life)
• What is lymphedema? (Medical News Today)
• Treating Lymphedema (Johns Hopkins)
• Compression Garments for Medical Therapy and Sports (National Library of Medicine) A friend with lymphedema goes to Aqualina, which has trained lymphatic therapists as well as garment fitters.
• Lymphoedema An Australian site.
• Lymphedema vs Edema (Alexa Ercolano, https://thelymphielife.com/The Lymphie Life: Living with Lymphedema
• Debra Swersky's stemwear

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Late-stage Lyme disease
(getting diagnosed and treated)

Also called chronic Lyme disease, late-stage neuroborreliosis, and "post-treatment Lyme Disease Syndrome" (PTLDS), this is a disease for which patients have trouble getting a timely diagnosis and adequate treatment. There is much dissension in the medical community about the nature of the disease (which many if not most infectious disease specialists say does not exist) and there is much controversy about available (or unavailable) treatments. It is often misdiagnosed as one of various "invisible illnesses," such as fibromyalgia and because of the misdiagnosis the right early treatment is delayed and Lyme bacteria can take hold. One woman I know of was misdiagnosed with polymyalgia rheumatica when her Lyme first presented as joint pain. The steroids she was taking for that suppressed her immune system and allowed the Lyme bacteria to flourish. Learn what they mean when they say you need to see a "lime-literate doctor." Here are some places to start learning about a complex medical/health problem:
• Signs and symptoms of untreated Lyme disease (CDC) Circular, expanding rash with target-like appearance. Illustrated.
• Lyme Disease Rashes and Look-alikes (CDC) Illustrated.
• Lyme Disease Is Spreading. Why Don’t We Have Drugs to Stop It? (Dana G. Smith, NY Times, 4-16-24) "Anti-tick medications exist for dogs, but certain concerns have hindered their development for humans. Safety concerns and doubts about public acceptance have hindered the development of these types of drugs for people. But with rates of Lyme and other tick-borne illnesses increasing in recent years, researchers are exploring new (and old) options, and a few are now being tested in human clinical trials." Read about vaccines and clinical trials for topical and oral drugs.
• Lyme Isn’t the Only Tick Disease to Worry About in the Northeast, C.D.C Says (Emily Anthes, NY Times, 3-16-23) Babesiosis, which can cause flulike symptoms, could be spreading because of rising temperatures and the growing deer population. Babesiosis is caused by parasites that typically make themselves at home in mice and other rodents. Poppy-seed-size blacklegged ticks, which are also known as deer ticks and can transmit Lyme disease, can spread the disease to humans after feeding on infected mice.Look at the photo of the tick.
• Lyme Disease Signs & Symptoms (Johns Hopkins) Excellent on recognizing Lyme disease.
• Lyme Disease: Important Facts to Know (WebMD) Includes how to recognize the tick bite, how to dress to avoid being bitten by the ticks that carry the disease, and other practical advice. Scientists point to a variety of causes for the spread of Lyme infection. Among them are reforestation, especially in the Northeast U.S., where Lyme disease is more prevalent; climate change and temperature extremes; suburbanization; and more exposure to the white-tailed deer, which is the black-legged tick's favorite mode of travel. (On their page about rheumatoid arthritis.)
• Tick identification chart (TickEncounter Resource Center)
• Tick removal steps (Lyme Disease Association)
• Lyme disease symptoms checklist
• Lyme Times (Lyme disease journal) Check back issues.
• ILADS doctor search (International Lyme and Associated Diseases Society, ILADS)
• EPA repellent search tool (overview of repellent varieties)
• Lyme and other tickborne diseases (Centers for Disease Control and Prevention, CDC) "Prevention is key in fight against tickborne disease". See also Lyme Disease (information page of Centers for Disease Control and Prevention, CDC). Here's CDC on Post-Treatment Lyme Disease Syndrome
• Lyme Disease Expected to Increase This Summer: What You Can Do (Tony Hicks, Healthline, 6-25-21)
• A big dispute behind a tiny tick bite: What to call the lingering effects of Lyme disease? (Janice Lynch Schuster, Washington Post, 9-15-14) "For most people with Lyme, a 30-day course of antibiotics is enough to cure the infection. But according to Gerry Wormser, an infectious-disease expert who helped develop the Lyme guidelines of the Infectious Disease Society of America, not everyone responds to this treatment. And for these people, a lifetime of health problems can ensue." A balanced look at a controversy about a disease and its treatment, enough to make you worry about ivory-tower Lyme deniers on one side and Lyme-treating charlatans on the other.
• Coming Soon: Human Testing Of Springtime Shot Against Lyme Disease (Carey Goldberg, CommonHealth, WBUR, 11-27-19) 'The MassBiologics effort is marching forward, backed by nearly $2 million in federal and state money. Klempner says one key goal is for the shot to be affordable when it becomes available, possibly as early as 2023 if all goes well. The shot is known as "pre-exposure prophylaxis," not a vaccine, because it delivers anti-Lyme antibodies directly to the patient rather than triggering the patient's own immune system to make the antibodies as vaccines do.'
• Can a new Lyme disease vaccine overcome a history of distrust and failure? (Brittany Flaherty, STAT, 8-22-19) As the threat of Lyme disease grows and fears surrounding it spread faster than the ticks that carry the infection, researchers are developing two vaccine or vaccine-like approaches to prevent this increasingly problematic disease. But don’t expect to get one soon. They are at least three to five years away from clinical use, according to their developers. That may seem like a long time to wait, especially since there are several Lyme disease vaccines available for dogs. But it’s taken researchers almost two decades to get this close — for the second time.
• How Close Are We to Getting a Lyme Disease Vaccine? (Kimberly Holland, HealthLine, 6-6-19) A vaccine to prevent Lyme disease infection was briefly available in the 1990s.

• Lyme Disease Is Baffling, Even to Experts (Meghan O'Rourke, The Atlantic, 8-14-19, September print issue)
• The incredibly frustrating reason there’s no Lyme disease vaccine (Brian Resnick, Vox, 5-30-19)
• Your Questions Answered: Dr. John Aucott On Lyme Disease (Erica R. Hendry, Diane Rehm blog, 7-8-15) Dr. Aucott is director of the Lyme Disease Clinical Research Center at the Johns Hopkins Bayview Medical Center and president of the Lyme Disease Research Foundation)
• Lyme Disease Wars (David Frey, Bethesda magazine, Nov.-Dec. 2016, a two-page article) Rockville physician Daniel Jaller believes the disease can be chronic
• Lyme disease linked to obsessive-compulsive symptoms (Chloe Reichel, Journalist's Resource, 5-8-18) Lyme disease, a bacterial infection spread through ticks, has been linked in a study to a new concern: obsessive-compulsive symptoms (OCS). Reichel explains the findings and two possible explanations for the findings.
• SLyme Disease: How a speck changed my life forever . Start your research by reading Amy Tan's piece on her experience with late-stage neuroborreliosis, which also appears in her book The Opposite of Fate. "As a patient with persistent Lyme disease, I have joined a club of people with a stigmatized illness, one many doctors do not want to treat. I am lucky to have a doctor who is willing to provide open-ended treatment. I am lucky I have insurance. Most Lyme patients are denied insurance. They are viewed as whacky. They have gone without appropriate care for so long they have lost their health, their jobs, their homes, their marriages, and even their lives."
• Losing Our Memory and Finding Each Other (Michelle Marie Wallace, Narratively, The Weekender, 8-30-15) "A battle with Lyme Disease decimated my memory right as Alzheimer’s did the same to my grandfather—but surrendering our thoughts brought us closer together than ever."..."I’d been sick with Lyme disease for eight years, though undiagnosed, and struggling to hide the slow spread of neurological symptoms. I had the sense that time was running out, but, as no doctors had ever found anything wrong with me..."
• Pseudo-science in the House? Scientists challenge a bill on Lyme disease (Brent Bambury, Day 6, 12-4-14) Factions are divided over the way Lyme disease is diagnosed and treated, and whether chronic Lyme disease even exists at all. The controversy itself (and hyperbole by one doctor) may be slowing down development of better treatments for the increasing number of suffering patients.
• Kris Kristofferson: An Outlaw at 80 (Neil Strauss, Rolling Stone, 6-6-16) "For years, doctors had been telling Kristofferson that his increasingly debilitating memory loss was due to either Alzheimer's or to dementia brought on by blows to the head from the boxing, football and rugby of his teens and early twenties....Then, earlier this year, a doctor decided to test Kristofferson for Lyme disease. The test came back positive. "He was taking all these medications for things he doesn't have, and they all have side effects," says his daughter. After he gave up his Alzheimer's and depression pills and went through three weeks of Lyme-disease treatment, Lisa was shocked. "All of a sudden he was back," she says. There are still bad days, but "some days he's perfectly normal and it's easy to forget that he is even battling anything."
• A Slow Slipping Away (Dana Parish, LymeDisease.org, 2016) Kris Kristofferson’s Long Undiagnosed Battle with Lyme Disease. When and how did Kris’s Lyme symptoms begin? About 12 years ago he was diagnosed with fibromyalgia, which looking back, should have been the first indication that a test for Lyme was warranted. But we suspect he’s been infected with Lyme anywhere from fourteen to thirty years because he used to have these chronic muscle spasms, which is a common symptom. (You must be a member to access the full article.)
• Lyme Disease crash course--Everything you need to know in 5 mins. (Lyme Disease Awareness, 7-13-08) The map needs updating--for instance, Virginia is now a state with a lot of Lyme disease.

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• Diagnosing and Treating Lyme Disease. (Diane Rehm radio show, NPR-WAMU-FM, 4-20-09--listen online). Patients who believe they suffer long-term problems from Lyme disease are claiming victory over a national doctors group. The Infectious Diseases Society of America has agreed to review its guidelines, which have said there's no evidence long-term antibiotics can cure "chronic Lyme" disease, or even that such a condition exists. Read the comments!
• Lyme disease controversy (this Wikipedia account of the controversy suggests that most medical authorities advise against "long-term antibiotic treatment for chronic Lyme disease, given the lack of supporting evidence and the potential toxicities."
• The Truth About Chronic (Late-Stage) Lyme Disease (blog post on this website)
• Chronic Lyme disease: in defense of the scientific enterprise (Phillip J. Baker, American Lyme Disease Foundation, in The FASEB Journal, Life Science Forum, 2010). "Because there is no clinical evidence that this condition is due to a persistent infection, advocating extended antibiotic therapy is not justified and has been shown to be harmful and of no benefit."
• Stepping into Self-Advocacy (Kate Sheridan, Mayo Clinic, 9-21-18) Kate Sheridan, a young adult struggling with a serious autoimmune condition triggered by Lyme disease, found that looking for ways to connect and communicate more effectively with her care team helped her become more of an advocate in her own care.
• Feasting on Rural America: The Spread of Tick-Borne Diseases (Jenn Lukens, Rural Health Info Hub, 5-17-17) Time is of the essence. Hosts for ticks.
• The Tick and Mosquito Project Information about controlling mosquitoes and ticks, organic repellents, preventing tick bites, and how to safely remove ticks from your body.
• Ten Facts You Should Know About Lyme Disease (IDSA)
• MyLymeData (a patient-powered research project for chronic Lyme disease). Add your Lyme data to MyLymeData to help find a cure for Lyme disease.
• Controversy over Chronic Lyme Disease.(Listen to Diane Rehm radio show, WAMU, 4-26-09, with Dr. Samuel Shor, Pamela Weintraub, and Philip Baker, ALDF. Chronic Lyme Disease is one of the most controversial issues in medicine today. Diane and her guests discuss the battle over diagnosis, treatment, and whether Chronic Lyme Disease even exists.)
• No Small Thing: The Shifting Lyme Landscape (video, Mary Beth Pfeiffer, Poughkeepsie Journal 9-22-13) Believers in chronic disease bolstered by research, laws; but CDC policies hold fast. The debate over the existence of chronic Lyme disease — among the most heated in modern medicine — has gained momentum toward the doctors who treat it, patients who have symptoms of it and researchers who study it, a review of Lyme developments suggests. See other stories in award-winning Poughkeepsie Journal series here. See also Climate Change Is a Tick’s Best Friend (Jonathan Hahn, Sierra Club, 6-26-18) Mary Beth Pfeiffer’s “Lyme” sounds the alarm on a climate-driven epidemic. See also Lyme: A Q&A with Mary Beth Pfeiffer (Katharine Sucher, Island Press, 4-18-18)
• Study examines new Lyme test; researchers seeking Dutchess doctors to participate (Deadline Club award winner by John Ferro, Poughkeepsie Journal, 4-3-14) U.S. researchers examine method that may lead to early detection, treatment
• Managing Yards and Green Spaces to Minimize Tick Populations (Becca Rodomsky-Bish, Habitat Network, 7-6-17) Creating beautiful landscapes at home and in our community that support a diversity of wildlife while also minimizing our exposure to ticks requires us to understand tick ecology and design our spaces appropriately. See also What Makes a Tick, Tick? The Ecological Needs and Life Cycle of the Blacklegged Tick.
• Why is it so hard to test for Lyme disease? (New England Center for Investigative Reporting (NECIR), The Takeaway, PRI, WGBH, and WNYC, 7-14-14)
• Antibiotics don't always kill Lyme, studies say (John Ferro, Poughkeepsie Journal, 3-27-14) Researcher says Lyme disease bacteria persist even after antibiotic treatments in mice.
• FIGHTING LYME DISEASE: Ticks don't harm mice, study finds, meaning Lyme threat is not decreased (John Ferro, Poughkeepsie Journal, 3-25-14) When paired with other research that has shown mice don’t fight off diseases effectively and don’t remove ticks from their bodies, the study underscores the threat the small mammals play as wellsprings for Lyme disease, malaria-like maladies such as babesiosis and anaplasmosis, and the incurable and often deadly Powassan encephalitis.[Back to Top]
• The Lyme disease chronicles, continued Chronic Lyme disease: in defense of the patient enterprise (Raphael B. Stricker, The Journal of the Federation of American Societies for Experimental Biology, December 2010)
• Sick: A Memoir by Porochista Khakpour, the New Yorker review for which (Lidija Haas, 6-4-18) offers an interesting perspective on the disease.
• CDC fact sheets and other resources on Lyme disease.
• Lyme Disease Transmission (Centers for Disease Control and Transmission, CDC). See lifecycle chart; risk greatest in late spring and summer.
• Lyme Disease Network
• Maryland Lyme, many fact sheets, including this one, which spells out how Johns Hopkins and the Infectious Diseases Society of America (and most health insurance companies) believe many of the "chronic" cases don't exist--and argue against extended use of antibiotics. Another statement along same line: Lyme disease often misdiagnosed, resulting in unnecessary antibiotics (T. Kobayashi et al., Healio, Infectious Disease News, 7-11-19) Why Lyme doubted? "A paucity of objective physical findings."
• Lyme disease tutorial (MedlinePlus)
• TickEncounter Resource Center promoting the most up-to-date, effective, tick-bite prevention techniques.
• The Lyme Wars (Michael Specter, The New Yorker, 7-1-13). The Lyme-disease infection rate is growing. So is the battle over how to treat it.
• Lyme Disease’s Staggering New Numbers (Michael Specter, New Yorker, 8-19-13) Lyme disease is officially a tremendous public-health problem in the United States.
• A New Weapon in the War on Ticks (Jason Fagone, New Yorker, 8-27-13). A miniaturized child's version of a type of rugged off-road vehicle called a rock crawler, the tick robot creates a facsimile of something the ticks will go after (and be exposed to something that kills them). Not on the market yet, but promising.
• 37-Year-Old Wife and Mom Battles Neck-Down Paralysis With Rehabilitation (a four-hankie video from Kindred Healthcare)
• Tick-Borne Illness Babesiosis a Hazard for Seniors (FDA, Health Day). Risk highest in certain East Coast states
• Parasites - Babesiosis (CDC)
• International Lyme And Associated Diseases Society (ILADS), the one to turn to if you have a chronic or persistent problem with tick-borne diseases.
• The Lyme Disease Foundation
• American Lyme Disease Association (ALDF) (private organization-based site that educates about Lyme disease)
• Clinical trials for Lyme disease (ClinicalTrials.gov, a service of NIH)
• Under Our Skin (video trailer for excellent documentary about doctors who refuse to treat or even acknowledge chronic Lyme disease--available on Netflix, Amazon streaming, etc.)
• Lyme Disease: The Great Imitator (Pamela Weintraub, Psychology Today, on a form of disease that can masquerade as psychiatric problems)
• When the Doctor Gets Sick, the Journey Is Double-Edged (Pamela Weintraub, Psychology Today, part 1 of three-part story about many patients' struggle to get a diagnosis, with neurological Lyme disease). Click here for part ii, for part iii , and Shadowland of the Mind (Neurological Lyme Disease, Part One), an excerpt from Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub
• Tick Time Bomb (Pamela Weintraub) The explosion of symptoms—muddled thinking, fatigue, a buzzing numbness in her limbs—set this writer on a quest for an answer. Stress, the doctor said. But the culprit lurked not in her 24/7 schedule but in the woods surrounding her home. "I lived alongside a forest dense with deer, in a town identified as a hot spot. Often I gardened, plunging my fingers into the soft brown soil without protection." Few Lyme patients had even heard of babesiosis, though the two epidemics had been spawned in tandem, could be equally debilitating, and were spreading at proportional rates. A host of alternate tick-borne spirochetes will never register on a Lyme test but may cause illness. As long as we live in suburbs carved into woods, we’ll be in the path of the tick tornado. • Chronic Lyme disease: A dubious diagnosis (Patricia Callahan and Trine Tsouderos, Chicago Tribune 12-8-10). A report from the other side.
• 'Doctors told me I was crazy': Avril Lavigne reveals fight to get diagnosed with Lyme disease took EIGHT MONTHS... (Heidi Parker, DailyMailOnline, 4-16-15) "Singer reveals it took her eight months to get diagnosed properly. Doctors told her she was crazy and that her ailment did not exist. Symptoms of the disease range from headaches and joint pain to severe fatigue, heart palpitations, paralysis of the face and even dementia. If not caught and treated early enough with antibiotics the condition can persist for years. The disease was recently highlighted after Real Housewives Of Beverly Hills star Yolanda Foster contracted it, who reveled she has lost the ability to read, write or even watch TV because of it. ...It was only several months later of, after a number of emergency room visits that a specialist finally diagnosed her."
• Tickborne Diseases of the United States (CDC)
• Lyme Disease Evaluation (this explanation of ARUP Lab's test for the disease may be helpful)
• A bit of history from 1976:A New Type of Arthritis Found in Lyme (Boyce Rensberger Special to The New York Times, 7-18-76) As dozens of cases accumulated, over a year or two, all within the adjacent townships of Lyme, Old Lyme and East Haddam in Connecticut, word of a mysterious new disease spread. After months of study, experts in arthritis at the Yale University School of Medicine in New Haven believe they are on the trail of a previously unknown disease, a form of arthritis caused by a virus carried by an insect or other biting arthropod such as a tick. Etc.[Back to Top]
• The Integrative Treatment of Lyme Disease (by Steven J. Bock, MD, reprinted from the International Journal of Integrative Medicine, May/June 1999). Dr. Bock is well-known for treating people whose disease other doctors don't recognize.
• How to Hold On: When Illness Intrudes on Romance (Channon Hodge, NY Times video, 2-27-15) A debilitating bout of Lyme disease threatened to derail Elisabeth C. Hall’s budding relationship with Matthew Danzig. But Mr. Danzig was undeterred because he had already fallen in love.
• Patient Zero (New Hampshire Public Radio) Exploring one of the most enigmatic epidemics of the 21st century: Lyme disease.
• An Often-Overlooked Health Epidemic: My Opinion Piece on AOL News Connie Bennett, opinion piece on AOL.com)
• Crystal Hefner Shares the Health Problems Breast Implants Can Pose (Bruce Y. Lee, Forbes, 7-24-16) She was diagnosed with Lyme disease and toxic mold, but realized that her symptoms matched those mentioned on a breast implant illness website and Facebook groupwith almost 3,000 members, she realized that her symptoms matched.

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Erythropoietic protoporphyria (EPP). This rare disease is described in an article focused on proposed legislation: Cutting the orphan drug tax credit would take away my day in the sun (Amy Dickey, STAT, 11-21-17) With EPP, essentially, sunlight can cause damage to the skin "similar to second-degree burns, but from the inside out. Pain medications don’t ease these phototoxic reactions." "It isn’t right to put up more barriers to developing effective drugs for orphan diseases and bringing them to market. People with these diseases have waited years, even lifetimes, for treatments. Reducing or eliminating tax incentives for orphan drugs would extend their waits, which is neither fair nor moral."

Fanconi Anemia: A Handbook for Families and Their Physicians by Lynn and Dave Frohnmayer (available free, online, in PDF format)

Fibromyalgia (FMS)

• American Fibromyalgia Syndrome Association (AFSA)
• National Fibromyalgia Association (NFA)
• National Fibryomyalgia & Chronic Pain Association (NFMCPA)
• Fibromyalgia Network
• Fibromyalgia (MedlinePlus, National Library of Medicine)
• Fibromyalgia In-Depth Report (NY Times fact sheet)
• Fibromyalgia (Mayo Clinic)
• Patient Voices: Fibromyalgia (NY Times Health Guide) With its generalized symptoms of pain, fatigue and digestive issues, fibromyalgia can often hide as something else for many years. Worse, some professionals doubt the existence of this condition, which can also cause chest pains, brain fog and depression. Here, six men and women speak about living with fibromyalgia. Join the discussion.
• Fibromyalgia Support Net (support for those with fibromyalgia, and their caregivers and families). Publishes a free e-book: Practical Living with Fibromyalgia (by Maurice S. Clarke). Site created by Mary Clarke and her husband, Maurice.
• Groups helping with fibromyalgia (posted by Fibromyalgia Support Net, the Clarkes' site)
• Focusing on Fibromyalgia (NIH)
• Q&A about fibromyalgia (National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
• Fibromyalgia (Wikipedia's entry on this is lengthy and heavily referenced)
• Exercise for fibromyalgia (PubMed Health, Cochrane Database of Systematic Reviews 10-17-07)
• Professor Marlene “Molly” Benjamin Explores Philosophy, Memoir and Medical Trauma in The Catastrophic Self "Fibromyalgia is perhaps the best example of a post-modern illness – an illness that combines biological and cultural features so intimately that it is hard to disentangle them, an illness that demonstrates the deep connection between body and mind..."
• Fibromyalgia (American College of Rheumatology)
• Acupuncture May Help Ease Fibromyalgia Pain, Study Finds (Steven Reinberg, Health Day, 2-16-16) (Story reviewed by Health News Review.
• Fighting Fibromyalgia (Lisa Robertson's blog)
• Fibro and Fabulous (Kimberley Linstruth-Beckom's blog)
• Fibromyalgia Experiment ("Sarakastic"'s blog)
• Women and Fibromyalgia
Cheaper drug first (Markian Hawryluk, The Bend Bulletin, 8-19-10) Insurance forces patients to try older drugs before getting new ones.
"The debate has boiled over in recent years among doctors treating patients with fibromyalgia, a systemic condition marked by chronic pain and a host of difficult-to-treat symptoms. Until recently, there were no drugs specifically tested and approved for the treatment of fibromyalgia. Instead, doctors used a variety of medications approved to treat things like depression, seizures, pain or muscle spasms, a practice known as off-label use.
"Then in 2007, Pfizer's Lyrica became the first drug approved by the Food and Drug Administration specifically for the treatment of fibromyalgia. Doctors thought it would be their go-to medication for treating the condition, but insurers thought differently....
"Physicians were stunned that insurance companies would force them to prescribe a drug that wasn't even approved for fibromyalgia before they could use a drug that was."
• Fibromyalgia – living with a controversial chronic disease (Marijke Vroomen Durning, RN with fibromyalgia, for Scope, Stanford Medicine, 8-13-13) "This is why many people with fibromyalgia don’t speak out. There is no such anger against people who say they have diabetes or cancer or Crohn’s disease – but it’s acceptable to brush off, deny, or criticize a claim that you have fibromyalgia."
• You Don't Have to Look Sick to Be Sick: Understanding Fibromyalgia (PDF, Marijke Vroomen Durning, Fibromyalgia Life & Chronic Pain, Nov/Dec 2012)
• Drug Approved. Is Disease Real? (Alex Berenson, NY Times 1-14-08, on the doubts that make this condition more difficult to live with)
• New research sheds light on mysterious fibromyalgia pain (Karen Weintraub, USA Today, 12-15-13) Commonly used medications have side effects and don't help everyone. "In recent years, scans of patients with fibromyalgia have revealed brain changes associated with pain, but the new research suggests these are a symptom rather than the cause of the condition."
• This Earth That Holds Me Fast Will Find Me Breath: The Morgan Freeman Story (Tom Chiarella, Esquire, 7-10-12) "It's the fibromyalgia," he says when asked. "Up and down the arm. That's where it gets so bad. Excruciating."
• 10 Food Rules for Pain Patients (Mara Betsch, "The Febro-Food Connection," Health). See thumbnails of all 10 rules.

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Helpful medical links

Inclusion Daily Express (international disabiity rights news service)

Insomnia. A Thousand and One Sleepless Nights (Patricia Morrisroe, Opinion, NYTimes, 2-25-10, with comments of interest)

Movement Disorders

• International Parkinson and Movement Disorder Society, Worldwide Education and Awareness for Movement Disorders, has useful information pages about ataxia, bradykinesia, chorea and choreoathetosis, corticobasal degeneration, dyskinesias (paroxysmal), dystonia, essential tremor, hereditary spastic paraplegia, Huntington's disease, multiple system atrophy, myoclonus, Parkinson's disease, progressive supranuclear palsy, restless legs syndrome, Rett syndrome, spasticity, Sydenham's chorea (St. Vitus' dance), tics, Tourette's sydrome, tremor, and Wilson disease.
• What is a physiatrist? (National Spinal Cord Association)
• Movement Disorder Emergencies in the Elderly (Babak Tousi, MD,
Cleveland Journal of Medicine). See also Restless Legs Syndrome.
• Parkinson' Disease (many helpful links, in section on Coping with Rare, Invisible, and Chronic Diseases
• ZocDoc (search for names of local specialists)
• NeuroTalk Support Groups and Community (for brain, neurological, and mental health conditions, including Parkinson's, MS, Reflex Sympathetic Dystrophy, traumatic brain injury, trigeminal neuralgia, ALS, and others)
• Wired for Habit (Elizabeth Dougherty, McGovern Institute for Brain Research, R&D, 8-19-15) "New research from Massachusetts Institute of Technology (MIT) shows that habit formation, at least in primates, is driven by neurons that represent the cost of a habit, as well as the reward....The findings, which appear in Neuron, could also provide insights into neuropsychiatric disorders that involve problems with repetitive behavior, such as Parkinson’s disease, Huntington’s disease, obsessive-compulsive disorder, Tourette syndrome and autism spectrum disorder."

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MRSA, superbugs, and antibiotic-resistant diseases

MRSA (Methicillin-resistant Staphylococcus aureus, the Superbug) (Patient Education, Beyond the Basics, UptoDate) Will include here ANY stories about superbugs and the development of antibiotic resistance
• Understanding MRSA Infection: The Basics
• MRSA Survivors Network
• MRSA Support Group (Yahoo)
• Superbug . Maryn McKenna's Wired blog on antibiotic resistance. See also Superbug, the old blog), which includes research, strategies, and stories from the struggle against methicillin-resistant Staph aureus (MRSA).
• Methicillin-resistant Staphylococcus aureus (MRSA) CDC fact sheets and posters.
• Antibiotics: The Perfect Storm (David Shlaes's blog) Shlaes is the author of Antibiotics: The Perfect Storm "We need new antibiotics to fight infections caused by resistant bacteria. But the marketplace, the structure of the pharmaceutical industry, regulatory agencies, and difficult science are conspiring to deny us the products we need. Shlaes presents perspectives and developments in the fight for new antibiotics.
• Can a Federally Funded ‘Netflix Model’ Fix the Broken Market for Antibiotics? (Andrew Jacobs, NY Times, 12-16-22) Shortages and drug-resistant germs have renewed attention on a $6 billion proposal in Congress that would reconfigure the way antimicrobial drugs are developed and sold. Recent shortages of amoxicillin, an effective antibiotic that pediatricians have long relied upon to treat strep throat and ear infections in children, have put a spotlight on an urgent global threat: the world’s shrinking arsenal of potent antibiotics and the lack of incentives to develop them. The broken marketplace for new antimicrobial drugs has stirred debate over a bill, languishing in Congress, that would dramatically reconfigure the way antibiotics are discovered and sold in the United States. "The measure attempts to address the vexing economics of antibiotics: Promising new drugs often gather dust on pharmacy shelves because health providers would rather save them for patients whose infections don’t respond to existing ones. That’s because the more frequently an antibiotic is used, the more quickly it will lose its curative punch as the targeted bacteria develop the ability to survive. New antibiotics also tend to be expensive, a disincentive for hospital-based prescribers who will often turn to cheaper ones, making it even harder for drug companies to earn back their initial investment." [A complex issue: Do read the whole article.]
• The Uncounted A Reuters investigation. The deadly epidemic America is ignoring. Part 1: Off the Radar (Ryan McNeill, Deborah J. Nelson and Yasmeen Abutaleb, Reuters Investigates, 9-7-16) ‘Superbug’ scourge spreads as U.S. fails to track rising human toll. No one is tallying the human cost of antibiotic resistant infections. Part 2: Costly Crisis (Yasmeen Abutaleb, Ryan McNeill and Deborah J. Nelson, Reuters, 11-18-16) One life, two donated organs and $5.7 million in bills – a tale of superbugs’ deadly costs. • Part 3: Running Low (Andrew Chung, Yasmeen Abutaleb and Deborah J. Nelson, Reuters Investigates, 12-15-16) As ‘superbugs’ strengthen, an alarming lack of new weapons to fight them. Stronger 'superbugs' expose lack of new drugs to fight them. Part 4: Deadly Silence (Deborah J. Nelson, David Rohde, Benjamin Lesser and Ryan McNeill, Reuters Investigates, 12-22-16) How hospitals, nursing homes keep deadly 'superbug' outbreaks secret. A Most Unwanted List (Yasmeen Abutaleb, Ryan McNeill and Deborah J. Nelson, Reuters Investigates, 9-7-15) A rogues' gallery of drug-resistant bugs the CDC considers to be threats to public health: Clostridium difficile, Carbapenem-resistant Enterobacteriaceae (CRE), Drug-resistant Neisseria gonorrhoeae, Multidrug-resistant Acinetobacter, Drug-resistant Campylobacter, Fluconazole-resistant Candida, Extended spectrum â-lactamase producing Enterobacteriaceae (ESBLs), Vancomycin-resistant Enterococcus (VRE), Multidrug-resistant Pseudomonas aeruginosa, Drug-resistant non-typhoidal Salmonella, Drug-resistant Salmonella typhi, Drug-resistant Shigella, Methicillin-resistant Staphylococcus aureus (MRSA), Drug-resistant Streptococcus pneumoniae, Drug-resistant tuberculosis, Vancomycin-resistant Staphylococcus aureus (VRSA), Erythromycin-resistant Group A Streptococcus, Clindamycin-resistant Group B Streptococcus.
• How Drug-Resistant Bacteria Travel from the Farm to Your Table (Melinda Wenner Moyer, Scientific American, 12-1-16) Antibiotic-resistant bacteria from livestock pose a deadly risk to people. But the farm lobby won't let scientists track the danger. In brief: (1) Antibiotics are used more heavily in farm animals than in people. This may be the largest source of antibiotic-resistant bacteria. (2) Drug-resistance genes spread more widely and rapidly on farms than scientists ever thought, new discoveries show. (3) The agriculture industry says fears are exaggerated, whereas researchers say companies are endangering public health.
• New antibiotic could cure superbug super-gonorrhoea (Health Medicine Network) "The antibiotic, only discovered seven years ago, has also been found to tackle hospital superbug MRSA and deadly E.coli and could go on to be tested against other bacteria, including drug-resistant TB."
• MRSA Survival Chances Predicted by Sequencing the Superbug’s DNA (Select Science)
• The Blood of Komodo Dragons Could Help Us to Slay Antibiotic Resistance (Peter Dockrill, Science Alert, 2-24-17) From Journal of Proteome Research.

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Mast Cell Activation Syndrome (MCAS)

• Do I Have Mast Cell Activation Syndrome (MCAS)? (Autonomic Dysfunction and POTS center, Franklin Cardiovascular Associates) MCAS is a disorder where components of the blood stream, namely mast cells, secrete various substances which can be involved in an allergic reaction or inflammatory reactions.
• Mast cell activation syndrome (MCAS) (MEpedia,a project founded by MEAction, powered by the patient community, and built by volunteers including patients, students, and researchers who are crowd-sourcing a knowledge base on the history, science and medicine of ME, CFS, and related diseases.
• Mast cell activation syndromes (Chem Akin, Journal of Allergy and Clinical Immunology, 8-1-17)

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Migraine

• The Daily Headache (Kerrie Smyres’ blog that looks candidly with living with headaches & migraines) See Beyond Kittens, Beyond Angels (Paula Kamen, Opinion, NY Times, 3-10-08) On the support those with chronic pain or chronic conditions can get from blogs about conditions such as migraine. She talks particularly about blog entries in The Daily Headache, such as The Thief and Grief ("Headaches steal so much of your life") and Trying Again After Migraine Cancels Plans
• Migraine resources (Migraine World Summit) Articles, videos and downloads for migraine education.
• American Migraine Foundation
• My (sort of) Invisible Handicap (Pam Kress-Dunn, Medium, 1-15-19) Thirteen years of chronic migraine and many attempts to relieve it.
• National Migraine Association (MAGNUM). See also the story Finding Good Migraine Care a Headache for the Uninsured (Amanda Gardner, BusinessWeek 4-12-10)
• Acute treatment of migraine in adults (Zahid H Bajwa and Jonathan H Smith, UpToDate, 3-11-19) UpToDate provides provide evidence-based articles/guidelines based on the peer-reviewed literature and clinician atabases, which are also reviewed by section editors and other experts/editors.
• New Drugs Could Prevent Migraine Headaches For Some People (Jon Hamilton, Shots, NPR, 12-4-17) In a pair of large studies, two drugs that tweak brain circuits involved in migraine each showed they could reduce the frequency of attacks without causing side effects, researchers report in the New England Journal of Medicine. The new drugs use special antibodies to dampen a system in the brain that modulates pain. The effect ("modest but meaningful") is a bit like soundproofing, says Stephen Silberstein, a study author and director of the Jefferson Headache Center in Philadelphia.
• Severe Headache Expert (Dr. Raeburn Forbes on Headache Self Care), author of Reduce Your Headache Risk: The Headache Friendly Lifestyle. @raeburn on Twitter
• Women With Migraine May Face Higher Threat of Heart Disease, Stroke (MedlinePlus, 6-1-16) Researchers say it should be considered an independent risk factor for future heart trouble. "Specifically, women with migraines had about a 39 percent higher risk of heart attack, a 62 percent higher risk of stroke and a 73 percent higher risk of heart surgery...[and] migraine was linked with a 37 percent higher risk of dying from a heart attack or stroke, the findings suggested.
• Headache Fact Sheets (National Headache Foundation)
• MAGNUM Migraine Awareness Group: A National Understanding for Migraineurs
• ACHE American Headache and Migraine Association (AHME)
• American Headache Society

• Patient Voices: Migraine (NY Times Health Guide)
• An Exploration Of 'The Migraine Brain' (Terry Gross, Fresh Air, WHYY, 11-4-08, interviews Carolyn Bernstein, author of The Migraine Brain: Your Breakthrough Guide to Fewer Headaches, Better Health
• Migraine Chick (Deborah Leigh's blog, and she has a bloglist of others writing on the topic)
• Migraine Cast weekly podcast, (Teri Robert, patent advocate)
• Migraine Research Foundation
• Migraine Quiz, excerpted from The Women's Migraine Survival Guide by Christina Peterson and Christine Adamec (on Migraine Survival site
• Migraines (Health Central)
• Help for Headaches (Ontario site)
• 27 Foods That Can Trigger Migraines (Health Central, an annoying format, but helpful)
• Keeping a Migraine Diary (Health Central)
• The Unrelenting Headache (Dr. Lisa Sanders, Diagnosis, NY Times, 5-17-13). Sometimes a headache is not just a headache.
• Shaking It Off (Jeff Tweedy, NY Times, 3-5-08). Known primarily as the lyricist, lead singer and guitarist of Wilco, one of America’s most popular and critically successful rock bands, Tweedy is also a lifelong migraine sufferer whose headaches were for decades compounded by bouts of depression and panic disorder. In this personal piece, he relates how migraines and mood disorders affected his musical career, how he struggled with addiction and painkillers, and how developing the ability to treat and manage his depression and panic helped him to remain migraine-free. "I tried a lot of different medication to ease the migraines and to be honest the painkillers never worked better than anything else — it didn’t work better than Imitrex. The way serious painkillers like hydrocodone and oxycontin work is that they make you not care about the pain and that was really desirable to me — to be able to continue to work and be creative and make music and actually feel normal. It was something that allowed me to be functional for a while."
• Acute treatment of migraine in adults (Jonathan A. Smith, UpToDate, 2-2020)
• PFO and Migraine: "Hole in the Heart" and Migraine Connection? "examines the connection between migraines and the PFO (patent foramen ovale), a hole in the wall of the heart that divides the right and left chambers and allows unfiltered blood to pass through." One of Duilcinea's picks (helpful links to migraine research and new migraine treatments)
• Using meditation to manage migraine pain (Michigan Headache & Neurological Institute)
• Biofeedback: A High-Tech Weapon Against Migraines by Sue Russell (HealthyMagination 7-18-11)
• Relieve Migraine Headache examines the role of the essential amino acid DL-phenylalanine (DLPA) in raising endorphin levels to combat chronic pain

MIGRAINE, BOOKS ABOUT
• Breaking the Headache Cycle: A Proven Program for Treating and Preventing Recurring Headaches by Ian Livingston and Donna Novak
• Living Well with Migraine Disease and Headaches: What Your Doctor Doesn't Tell You...That You Need to Know by Teri Robert
• The Migraine Brain: Your Breakthrough Guide to Fewer Headaches, Better Health a book by Carolyn Bernstein and Elaine McArdle
• Migraine Expressions: A Creative Journey Through Life With Migraine by Betsy Baxter Blondin
• Validate Your Pain! Exposing the Chronic Pain Cover-Up by Allan Chino and Corinne Dille Davis
• Migraine Treatment, Prevention in Black Women. Pam Oliver talks with Farai Chideya (NPR, 2-28-08) about what causes painful headaches and what can be done to help. African Americans tend to report higher levels of headache pain but are less likely to get treatment.
• What's Triggering Your Migraine? (Allison Aubrey, Morning Edition, NPR 4-27-06)
• Q & A: Your Questions on Migraine (Vikki Valentine, NPR, with David Buchholz, co-author with Stephen Reich of Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Pain. It's allergy season and your head is pounding, what do you take? Tylenol Sinus, Advil or Imitrex? And what's a vegan with migraine to do?
• The Woman's Migraine Toolkit: Managing Your Headaches from Puberty to Menopause by Dawn A.Marcus and Philip A. Bain

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Parkinson's disease

• Patient Voices: Parkinson's Disease (NY Times) How does Parkinson’s disease affect the body? The mind? How does having a progressive disease affect families? Listen to the stories of seven men and women with Parkinson's disease. (Join the discussion.)
• Unlocking Parkinson’s Disease (Jon Palfreman interviewed on Science Friday, NPR, 9-18-15) 'In his book Brain Storms, he describes having Parkinson’s as “going on vacation in another country and having to drive on the ‘wrong’ side of the road.” Palfreman describes his own journey with the disease and discusses new treatments for Parkinson’s patients.' He also discusses Essential Tremor. See excerpt from chapter, "From Shaking Palsy to Parkinson's: Defining a Neurodegenerative Disease."
• Exercise Is Key for Parkinson’s Relief. But Bias, Underdiagnosis Hold Black Patients Back. (Elizabeth Cohen, KFF Health News, 8-24-24) Exercise is considered fundamental treatment for Parkinson’s disease, a progressive condition that attacks the central nervous system. But there’s a huge equity gap, researchers say, with Black people missing from popular treatment programs.
---Exercise (Parkinson's Foundation) The Parkinson’s Outcomes Project shows that people with PD who start exercising earlier in their disease course for a minimum of 2.5 hours per week experience a slowed decline in quality of life compared to those who start later. Establishing early exercise habits is essential to overall disease management.
• Parkinson's Disease on the Rise? (Pauline Anderson, Medscape, 6-23-16) A new study shows that the incidence of parkinsonism and Parkinson's disease (PD) increased between 1976 and 2005, more than doubling in older men during this period. Age-adjusted incidence rates of parkinsonism were stable for women during this 30-year time frame, but increased for men from 38.8 to 56.0 cases per 100,000 person-years. The increase in incidence rates was greater for men 70 years or older. They defined parkinsonism as the presence of at least two of four cardinal signs: rest tremor, bradykinesia, rigidity, and impaired postural reflexes.
• Parkinson's Risk Factor Spotted in 12-Year Study (Judy George, MedPage Today, 3-13-23) Adults over 40 with frailty or prefrailty had higher incidence of subsequent Parkinson's disease. Chen and colleagues used criteria for five domains of the Fried frailty phenotype -- weight loss, exhaustion, low physical activity, slow gait speed, and low grip strength -- to assess frailty in their study.

• The Parkinson's Progression Markers Initiative (PPMI) is a landmark study launched in 2010 to find biomarkers -- disease indicators that are critical missing links in the search for better Parkinson's disease (PD) treatments. Noted on Foxfeed blog (the Michael J. Fox Foundation for Parkinson's Research) The latest reporting and analysis on breakthroughs in Parkinson's research and issues that matter most to you.

• Parkinson's Disease: 5 Reasons for Hope (Johns Hopkins Medicine)
• Parkinson's Disease: Hope through research (National Institute of Neurological Disorders and Stroke, or NINDS)

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• Parkinson's Disease on the Rise? (Pauline Anderson, Medscape, 6-23-16) A new study shows that the incidence of parkinsonism and Parkinson's disease (PD) increased between 1976 and 2005, more than doubling in older men during this period. Age-adjusted incidence rates of parkinsonism were stable for women during this 30-year time frame, but increased for men from 38.8 to 56.0 cases per 100,000 person-years. The increase in incidence rates was greater for men 70 years or older. They defined parkinsonism as the presence of at least two of four cardinal signs: rest tremor, bradykinesia, rigidity, and impaired postural reflexes.
•Parkinson's Risk Factor Spotted in 12-Year Study (Judy George, MedPage Today, 3-13-23) Adults over 40 with frailty or prefrailty had higher incidence of subsequent Parkinson's disease. Chen and colleagues used criteria for five domains of the Fried frailty phenotypeopens in a new tab or window -- weight loss, exhaustion, low physical activity, slow gait speed, and low grip strength -- to assess frailty in their study.
• Progressive Supranuclear Palsy (PSP) (National Institute of Neurological Diseases and Disorders, NINDS, NIH) Progressive supranuclear palsy (PSP) is a rare neurological disorder that affects body movements, walking and balance, and eye movements. PSP is caused by damage to nerve cells in areas of the brain that control thinking and body movements. It is one of a family of neurological conditions called atypical parkinsonism, and belongs to the category of frontotemporal disorders.

PSP is a rare neurological disorder that impacts body movements, walking and balance, and eye movements, according to the National Institutes of Health. a form of atypical parkinsonian syndrome, also known as a Parkinson-plus disorder.

It's often misdiagnosed as Parkinson's disease, as the two disorders share many symptoms. Parkinson's disease is a brain disorder that causes unintended or uncontrollable movements, such as shaking, stiffness and difficulty with balance and coordination. However, according to NIH, PSP progresses more rapidly than Parkinson's. While receiving treatment for Parkinson’s disease, Democratic Rep. Jennifer Wexton of Virginia received a modified diagnosis of PSP, also known as a Parkinson-plus disorder, and decided not to seek re-election.

• 10 Things Your Doctor Won't Tell You About Parkinson's Disease (Cathleen Doheny, Everyday Health, 4-26-16) Patients living with Parkinson's disease share what they wish they'd known when they were diagnosed. Among them: "Exposure to some pesticides has been shown to raise the risk of developing Parkinson’s. Problematic chemicals include organochlorine pesticides like DDT, dieldrin, and chlordane. Rotenone and permethrin have also been implicated.
"Exposure to the fungicide maneb or the herbicides 2,4-dichlorophenoxyacetic acid (2,4-D), paraquat, or Agent Orange may raise the risk of Parkinson’s. The U.S. Department of Veterans Affairs considers Parkinson’s to be a possible service-related illness if the person was exposed to significant amounts of Agent Orange."
• Putting it all Together: Reflections from Fifty Interviews with World Leading Parkinson’s and Biomedical Experts (Benjamin Stecher, Journal of Parkinson's Disease, 6-11-18) Do read the long series of quotes at the end.

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• Motor Symptoms of Parkinson’s Disease (Parkinson's News Today) Spend time on this website.
• Parkinson’s Disease Treatments (Parkinson's News Today)
• FDA Clears Deep-Brain Stimulation System for Parkinson's (Megan Brooks. Medscape, 12-12-17)
• How Do You Die of Parkinson’s Disease? (Roni Caryn Rabin, Well, NY Times, 1-19-17) The most common cause of death in those with Parkinson’s is pneumonia, because the disease impairs patients’ ability to swallow, putting them at risk for inhaling or aspirating food or liquids into their lungs, leading to aspiration pneumonia.
• Looking for Parkinson’s Sooner (Jane E. Brody, NY Times, Well, 3-16-15) "The Holy Grail in any progressive disease is to find it early enough to start effective treatment before irreversible damage has occurred. For Parkinson’s disease, which afflicts 1.5 million Americans and growing, a new study has brought this goal a little closer....The findings underscore the prevailing view among neurologists that the damage caused by this disease begins long before classic symptoms like tremors, rigidity and an unsteady gait develop and a definite diagnosis can be made....

Dr. Claire Henchcliffe, director of the Parkinson’s Disease and Movement Disorders Institute at Weill Cornell Medical Center, said that REM sleep behavior disorder, characterized by a tendency to act out one’s dreams while asleep, is one of the strongest prediagnostic symptoms, along with a lost sense of smell and subtle changes in cognition....“All forms of exercise seem to be good – dance, aerobics, stretching, whatever appeals to you,” she said. “With respect to diet, a Mediterranean-style diet” – rich in fresh fruits and vegetables, whole grains, fish and olive oil — “is most closely associated with a reduced risk of developing Parkinson's.
• He was the first person to be diagnosed with a new sleep disorder. It led to a scientific breakthrough (Sandee LaMotte, CNN, 6-8-24) A man who acted out his dreams was the first case of a new sleep disorder that led investigators to one of the earliest signs of Parkinson’s disease and dementia.
• Our eyes may provide early warning signs of Alzheimer’s and Parkinson’s (Elizabeth Anne Brown, Washington Post, 2-27-2021) "Changes to the retina may foreshadow Alzheimer’s and Parkinson’s diseases, and researchers say a picture of your eye could assess your future risk of neurodegenerative disease. Pinched off from the brain during embryonic development, the retina contains layers of neurons that seem to experience neurodegenerative disease along with their cousins inside the skull. The key difference is that these retinal neurons, right against the jellylike vitreous of the eyeball, live and die where scientists can see them....By the time a patient complains of memory problems or tremors, the machinery of neurodegenerative disease has been at work probably for years or decades." Early detection is "sort of the Holy Grail."
• The Link Between Parkinson’s Disease and Toxic Chemicals (Jane E. Brody, NY Times, 7-20-2020) A new book calls the increasing prominence of Parkinson’s “a man-made pandemic.” The book (to be published March 2021: Ending Parkinson's Disease: A Prescription for Action by Ray Dorsey, Todd Sherer, Michael S. Okun, and Bastiaan R. Bloem.
• Trichloroethylene: An Invisible Cause of Parkinson’s Disease? (Journal of Parkinson's Disease) TCE is found in numerous consumer products (Table 1), including typewriter correction fluid, paint removers, and carpet cleaners. Until the 1970s, it was used to decaffeinate coffee. The volatile TCE was also an inhaled anesthetic until the U.S. Food and Drug Administration banned it in 1977.

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• New resources can help you better report on Parkinson’s disease (Liz Seegert, Covering Health, 10-29-18) The tip sheets mentioned in this article are available to members of the Association of Health Care Journalists (AHCJ).
• Parkinson's Foundation Centers of Excellence. Of the 45 medical centers designated Centers of Excellence, 31 are in the United States.
• The VA's six Parkinson’s Disease Research, Education and Clinical Centers (PADRECCs), part of their Centers of Excellence for Parkinson's disease (US Dept. of Veterans Affairs)
• For Parkinson’s patients, a surreal brain surgery offers new hope (Brett Kelman, Nashville Tennessean, 8-29-18) At Vanderbilt University Medical Center, deep brain stimulation shows signs of slowing the spread of Parkinson's tremors. “We’ve gotten a signal from our early study that is super exciting, but what we don’t know is if it's real yet,” said Dr. David Charles, Vanderbilt's vice chair of neurology, who led the research. “Now it will still take a big study to answer the big question — is this really slowing the progression of the disease?”
• Clinical trials of potential Parkinson's therapies (NINDS) You can filter the data on these many studies by age group, trial status, study type, and other criteria.
• NeuroTalk support groups
• The Science of Parkinson's. Simon Stott's blog of Plain English information about the research being conducted on Parkinson's. Stott is a researcher at the University of Cambridge, U.K.
• C-Span Q&A with Michael Kinsley (4-12-16) about living with Parkinson’s disease (of particular interest, the part where he describes his "pacemaker for the brain."
• How special walking stick helps Parkinson sufferers (CNN, 5-22-16)
• Parkinson's disease: What to know about Alan Alda's diagnosis (Ashley Welch, CBS News, 7-31-18) Watch the video, read the brief story. "This is a disease that's different for almost everybody who has it. There are some common symptoms, but mostly everybody's different and each day is different from the next," he said.
• How I Used Writing to Survive (Or: Writing Despite Illness) (Audrey Berger Welz, on Jane Friedman's blog, 11-21-17) As her Parkinson's advanced, she suffered another health blow, and was typing with one finger, but getting that novel (Circus of the Queens) finished and published kept her going.

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• Michael J. Fox on acting with Parkinson’s, taking the wrong roles and staying positive: ‘Until it’s not funny anymore, it is funny.’ (David Marchese Q&A with Fox, NY Times Magazine, 3-1-19) Though Fox announced his Parkinson’s diagnosis in 1998, he’d known he had the disease since 1991. On how he handled his diagnosis and the disease.
• Brain Storms: The Race to Unlock the Mysteries of Parkinson's Disease by Jon Palfreman. PW: "...part scientific investigation, part medical detective story, and part memoir, and it opens wide a window into the world of Parkinson's."
• A Life Shaken: My Encounter with Parkinson's Disease by Joel Havemann
• New Parkinson’s drug could reduce hallucinations, but at what cost? (Bob Tedeschi, STAT, 3-18-16) As many as half of the million or so Americans with Parkinson’s experience hallucinations, illusions, and delusions — symptoms that are typically benign, but sometimes deeply destructive. In a cruel twist, these psychiatric disturbances often result from standard Parkinson’s drugs, leaving patients to choose between physical and emotional stability, or try medications that aren’t designed for the condition. On Tuesday, an advisory panel to the Food and Drug Administration voted 12-2 in favor of approving a new antipsychotic drug — Acadia Pharmaceuticals’ Nuplazid — that’s specifically designed for Parkinson’s psychosis.
• Normal pressure hydrocephalus (often misdiagnosed as Parkinson's or Alzheimer's)
• What is Parkinson’s Disease? (Parkinson's Disease Foundation) See also Managing Your PD and Complementary Therapies (speech therapy, physical therapy, and occupational therapy), Non-Motor Symptoms, the Aware in Care Kit, Diagnosis, Treatment, and Caregiving.

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• FDA Repays Industry by Rushing Risky Drugs to Market (Caroline Chen, ProPublica, 6-26-18) As pharma companies underwrite three-fourths of the FDA’s budget for scientific reviews, the agency is increasingly fast-tracking expensive drugs with significant side effects and unproven health benefits....since the FDA fast-tracked approval of Nuplazid (a drug for hallucinations and delusions associated with Parkinson’s disease) and it went on the market in 2016 at a price of $24,000 a year, there have been 6,800 reports of adverse events for patients on the drug, including 887 deaths as of this past March 31.
• Parkinson’s causes his body to freeze up. Only one thing -- boxing -- gets him moving again. (Dan Kiefer, WaPo, 5-9-16) A decade ago, Scott Newman, an Indiana prosecutor and early-onset Parkinsonian, took up boxing and found it improved his agility and daily functioning. He eventually founded Rock Steady Boxing, a program for Parkinson’s patients that now operates in 89 sites around the country...
• This glove could make eating easier for those with Parkinson’s disease (Matt McFarland, WaPo, 2-18-16) GyroGear thinks it has a solution for patients suffering from Parkinson’s disease or essential tremor. The start-up has created a glove that steadies a person’s hand, making it easier to complete everyday tasks such as eating.

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• A healthy state of denial (Michael Kinsley, Guardian 12-13-01). Eminent American writer Michael Kinsley explains why he has spent the past eight years pretending not to have Parkinson's
• Like a Wheel, but Turning Slower (Sam Tanenhaus, NY Times, 8-28-13) Linda Ronstadt Discusses Her Memoir and Parkinson’s, with an emphasis mostly on her musical career.
• Ask the Expert: Progression Rates to Clinical Milestones in Parkinson’s (Lewy Body Dementia Association)
• Mine Is Longer than Yours. Michael Kinsley (The New Yorker, 4-7-08). A diagnosis of Parkinson's disease forces Kinsley to reflect on mortality earlier than his peers; in this piece, he examines longevity as the last competitive game among baby boomers.
• Parkinson’s Disease and Parkinson’s Dementia (HelpGuide.org)
• A Silver Lining (Amazon Kindle). Elaine Benton's memoir of growing up with Gaucher disease (a rare, inherited disorder), and battling Parkinson's, while remaining positive and living life to the full.
• Aging and Parkinson's and Me (John Schappi's blog). He writes: "I was diagnosed with Parkinson’s in September 2009 at age 80. Prior to the diagnosis, while depressed and anxious, I made plans to sell my car and house and move into a senior living residence. I also bought the book "Final Exit." Now I still have my car and house and I can't remember where I put the "Final Exit" book." Three more samples:
---#1 of My Big Three: Exercise
---#2 of My Big Three: Meditation
---#3 of My Big Three: Sleep "Prescriptions"
• Wired for Habit (Elizabeth Dougherty, McGovern Institute for Brain Research, R&D, 8-19-15) "New research from Massachusetts Institute of Technology (MIT) shows that habit formation, at least in primates, is driven by neurons that represent the cost of a habit, as well as the reward....The findings, which appear in Neuron, could also provide insights into neuropsychiatric disorders that involve problems with repetitive behavior, such as Parkinson’s disease, Huntington’s disease, obsessive-compulsive disorder, Tourette syndrome and autism spectrum disorder."
• Navigating Life with Parkinson Disease by Sotirios Parashos, Rose Wichmann, and Todd Melby

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• Parkinson's Treatment: 10 Secrets to a Happier Life by Michael S. Okun, MD, author of 10 Breakthrough Therapies for Parkinson's Disease
• Top 10 recommendations for PWPs and Care Partners For PWPs (an excellent resource page: Parkinson's resources from the patient's perspective). Shaky Paws Grandpa (Kirk Hall)
• Secret Handshake (Elaine Benton's blog on Living with Parkinson's and Gaucher's disease). This entry: Having Parkinson’s is somewhat like belonging to a secret society. One member of this secret society can always spot another, without a single word being uttered. See her book of poems: Parkinson's, Shaken Not Stirred!
• Michael J. Fox's memoir Always Looking Up: The Adventures of an Incurable Optimist. Listen to the audiobook of this book by the actor-turned-philosophical-optimist about what can be taken from you (in his case, with Parkinson's disease, a neurological degenerative disease that takes away easy control of movement) and what cannot.
• Camptocormia in Parkinson's disease. (Melamed E and Djaldetti R. J Neurol. 2006 Dec;253 Suppl 7:VII14-16.) "It is becoming increasingly recognized as a prominent and disabling phenomenon during the course of Parkinson's disease (PD). In our experience, there is no clear correlation between camptocormia and levodopa treatment. In a few patients, the abnormal posture improved and in others it was unaltered or even became worse following levodopa administration." See also Camptocormia
• Parkinson's Patients Find Grace in Dance (Jacki Lyden, All Things Considered, 12-13-08) "Iatrogenic" refers to illness caused by medical testing or treatment. In theory, some movement disorder emergencies in the elderly—such as rigidity, dystonia, hyperkinetic movements, and psychiatric disturbances—could "be avoided by anticipating them and by avoiding polypharmacy and potentially dangerous drug interactions."
• Movement disorder emergencies in the elderly: Recognizing and treating an often-iatrogenic problem (Babak Tousi, Cleveland Clinic Journal of Medicine, 6-08).
• Articles about Parkinson's (New England Journal of Medicine)
• A Life Shaken:My Encounter with Parkinson's Disease by Joe Havemann.

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Multiple sclerosis (MS)

• Patient Voices: Multiple Sclerosis (New York Times) Multiple sclerosis can be an insidious disease, affecting many parts of the body and gradually causing serious disability. What is it like to live with M.S.? Six men and women speak about their experiences.
• Ask an MS Expert Program Series Learn more about multiple sclerosis from top MS experts. Programs focus on trending topics related to the MS community. Experts answer your questions and MS Navigators provide live resource support throughout each program.
• Ask an MS Navigator Skilled, compassionate professionals connect you to the information, resources and support needed to move your life forward.
• ‘My Body Is a Clock’: The Private Life of Chronic Care (Sara J. Winston, guest essay, NY Times, 6-29-23) "Chronic illness is well hidden from society. Before I had a name for what ailed my body, I thought of myself as dehydrated and out of shape. I believed that the physical discomfort I’d experienced for years — numbness, pain, tingling and pins-and-needles sensations throughout my body — must be traceable to a cause of my own making. "That changed on Christmas Eve 2014, when a neurologist at NewYork-Presbyterian Hospital read my M.R.I. and confirmed that I had relapsing-remitting multiple sclerosis. This form of the disease, as the name implies, is characterized by unexpected flare-ups and periods of remission." "Treatment has been successful, and I have remained in a state of remission while taking it as recommended — every 28 days, indefinitely. But even today, nine years into managing the illness, I struggle with the chronic nature of my condition. I am always aware that if I lose my access to regular treatment, I’ll be at risk of severe disability....Patient education and advocacy have been critical to my health care experience."
• 5 Things to Know About Biosimilars (Sarah Anderson, Momentum Magazine, 7-21-23) Are biosimilars the same as generics? Are they safe? The first biosimilar disease-modifying therapy for MS is expected to launch later this year so we’re breaking down everything you need to know. Disease-modifying therapies, or DMTs, are a type of treatment for multiple sclerosis that can reduce the number of relapses, delay progression of disability and limit new disease activity.
• Newly Diagnosed (National Multiple Sclerosis Society) MS information and resources to help you make treatment decisions, learn more about employment options and connect with others.
• 4 Tips for Dealing With a Dual Diagnosis (The National MS Society) https://momentummagazineonline.com/blog/5-things-to-know-about-biosimilars/
• How MS Affects Men (Jon Strum on Real Talk MS radio, YouTube video, Ask an MS Expert) Jon interviews Dr. Robert K Shin (Department of Neurology at MedStar Georgetown University Hospital and director of the Georgetown Multiple Sclerosis and Neuroimmunology Center). Women are diagnosed with MS three times more than men and are perhaps less likely to seek treatment early, which is important. Those first neurological symptoms are vague enough that patients may ignore them at first. Other talks on that YouTube page, including How Aging Affects MS.

• TikToker puts restaurants, bars to the test over wheelchair accessibility (Tom Yun, CTV News) A Toronto-based disability advocate is using the power of TikTok to raise awareness over the lack of wheelchair accessibility at many restaurants and bars. Her video revierws.
• How I’m Living My Best Life with Multiple Sclerosis After 46 years of perfect health, Robin Brockelsby was diagnosed with an incurable disease called multiple sclerosis. In this compelling, informative and uplifting talk she shares what multiple sclerosis is, how it feels to experience a life-changing medical diagnosis and the tools she is using to fight back against her chronic disease with strength and purpose. New-generation treatments are keeping brain cells alive.
• New Research Links Epstein-Barr Virus to Multiple Sclerosis (Science Friday, 1-22-22) For years, they have been testing out a hypothesis that the Epstein-Barr virus causes multiple sclerosis, a chronic and incurable disease of the nervous system. (Epstein-Barr is the contagious virus responsible for mononucleosis.) They found that service members who contracted the Epstein-Barr virus were 32 times more likely to later be diagnosed with MS.
• Multiple Sclerosis (MS) Health Center Slideshow: A Visual Guide to Multiple Sclerosis. (Web MD)
• What is MS? (National Multiple Sclerosis Foundation)
• MS Connection blog (and it links to other MS blogs)
• Peer Connections: One-on-One (sponsored by National MS Society)
• Medical, Scientific, Political and Journalistic Pitfalls in the Study of Confusing Illnesses (video of Julie Rehmeyer's talk at Santa Fe Institute on how poorly federal agencies, researchers, doctors, and the media handle confusing illnesses, without clear mechanisms or sharply-defined symptoms, which are often considered psychosomatic. She focuses on CFS but the same pattern operates with AIDS, multiple sclerosis, and chronic Lyme disease.) Listen to the whole thing.
• Blindness finally revealed the hidden cause of my fatigue: MS (Penny Anderson, The Guardian, 5-27-15) Multiple sclerosis is difficult to diagnose, but a less-than-caring response from healthcare professionals made the job even harder. See also Four in five multiple sclerosis sufferers in UK are misdiagnosed (Haroon Siddique, The Guardian, 5-27-15) Poll finds more than a quarter are told incorrectly they have a trapped nerve, with 39% of people with MS waiting over a year for correct diagnosis. Many people with MS can appear to be fine on the outside while struggling with hidden symptoms such as numbness, tingling, problems with mobility and balance, vision and dizziness, fatigue, bladder problems, muscle stiffness or pain.
• Multiple Sclerosis Discovery Forum (MSDF) This link is to the excellent series of podcasts. See also News briefs, New findings, News synthesis (for example, Does Diet Matter in Multiple Sclerosis? (11-25-14)
• Magnetic Resonance Imaging (MRI) (National MS Society)Note section on Possible safety concerns with gadolinium contrast agents
• MS symptoms directory and news archive (Web MD)
• Treatment of MS (Health Central)
• 29 Things Only Someone with MS Would Understand (Doug Ankerman, cartoon humor, Livestrong, 4-25-14)
• Stand Up: a memoir of disease, family, faith & hope by Ken Cruickshank. "Ken Cruickshank’s memoir about his experience living with progressive primary multiple sclerosis is a deeply moving and powerful read," writes one Amazon reviewer, in a collection of glowing review comments.
• From hope to medical nightmare (John Fauber of the Milwaukee Journal Sentinel and Kristina Fiore and Matt Wynn of MedPage Today, Journal Sentinel, 3-28-18) Despite FDA warnings, state boards lag in taking action on controversial MS treatment. In 2012, James McGuckin Jr. performed a risky, unproven procedure for multiple sclerosis on Theresa Leipzig at his North Carolina medical facility....As McGuckin snaked a catheter from Leipzig’s leg to a kidney vein, he placed a stent that propped open a blood vessel. Then he placed another stent in the jugular vein in her neck, all with the intent of relieving her multiple sclerosis. But such treatments had never been proven to work, had not been approved by the U.S. Food and Drug Administration and were being challenged by the medical community.... Less than two weeks after the procedure, a stent dislodged and traveled to her heart, requiring emergency open-heart surgery....McGuckin is one of about 30 doctors who performed the unproven procedure — with some requiring patients to pay as much as $10,000 up front. They say the procedure treats what is termed “chronic cerebrospinal venous insufficiency,” or CCSVI, a condition supposedly linked to MS."
• I was elected then diagnosed with MS. My disease has taught me about representation (Golriz Ghahraman, New Zealand, The Guardian, 3-2-2020) I am speaking out about my diagnosis because all people deserve to see themselves in our parliament.
• Chronically Ill, Traumatically Billed: The $123,019 for 2 Multiple Sclerosis Treatments (Jay Hancock, a crowdsourced investigation by KHN and NPR, 11-28-18) Shereese Hickson’s multiple sclerosis was flaring again. Spasms in her legs and other symptoms were getting worse. This summer, a doctor switched her to Ocrevus, a Genentech drug approved in 2017 that delayed progression of the disease in clinical trials better than an older medicine did. Such medicines have become increasingly expensive as a group, priced in many cases at well over $80,000 a year. Hospitals delivering the drugs often take a cut by upcharging the drug or adding hefty fees for the infusion clinic. Even in a world of soaring drug prices, multiple sclerosis medicines stand out. Because her MS has left her too disabled to work, she is now on Medicare; she also has Medicaid for backup. No one told Shereese Hickson she qualified for financial assistance to cover her portion of a $123,019 bill ($3,620) until she called the hospital. Also, watch: Why Infusion Drugs Come With Sticker Shock (CBS This Morning). Kaiser Health News Editor-in-Chief Elisabeth Rosenthal discusses this “Bill of the Month” installment.

Neurological Disorders, A to Z (Brain & Life)

Osteoporosis

• The High Cost of Osteoporosis (Diana Swift, Medical Journey, MedPage Today, 1-8-24, Part 2 of a series) Why prevention is also crucial from an economic point of view. Osteoporosis patients will be advised to invest in refitting their homes with fall prevention in mind, removing obstacles and installing grab bars, railings, non-slip flooring, and better lighting. They may need to update their eyeglasses, purchase more supportive and slip-proof orthopedic-style footwear, and buy assistive walking devices or even scooters. They might pay more for household help and have higher transportation and delivery fees. Physiotherapy, exercise rehabilitation, and psychological counseling are possible added expenses, Moseley noted.
• New Insights Into the Complex Biology of Osteoporosis (Diana Swift, Medical Journey, Medical Journey, MedPage Today, Part 1 of a series) Synergy of genetic, intrinsic, exogenous, and lifestyle factors.
• The Latest on Osteoporosis Treatment and Diagnosis Diana Swift, MedPage Today, Part 2) Medications reduce fracture risk
• Osteoporotic Fragility Fractures (Diana Swift, MedPage Today, Part 3) Breaking a hip can be as lethal as a heart attack
• For Your Patients: Osteoporosis, the 'Silent Thief' (Diana Swift, MedPage Today, Part 3) The disease quietly steals patients' bone, putting you at risk of fractures. Warning symptoms:
   Unexplained back pain, which could result from osteoporosis-weakened or collapsed vertebrae in the spine
   Noticeable shrinking from your adult height
   Stooped posture – in extreme cases, the so-called "dowager's hump."
• Case Study: First-Time Mom's Severe Low Back Pain After Breastfeeding (Kate Kneisel, MedPage Today, Part 4) Treating pregnancy- and lactation-associated osteoporosis was challenging, especially after complications from the initial therapy
• As Men Live Longer, Osteoporosis Looms Larger (Diana Swift, MedPage Today, Part 5) Time to close the awareness and screening gender gap
• These Other Medical Conditions and Treatments Can Also Increase Osteoporosis Risk (Diana Swift, MedPage Today, Part 6) Inflammation, corticosteroids, and impaired nutrient metabolism fuel low bone density
• Talking to Patients About Osteoporosis (Diana Swift, MedPage Today, Part 7) Helping them understand the consequences of this brittle bone disease
• For Patients: Talking to Your Doctor About Osteoporosis (Diana Swift, MedPage Today) Diagnosed early, fragile bones and full-blown osteoporosis can be treated, and fractures can be prevented. Ask your doctor for a bone densitometry test by age 65 if you are a woman, by age 70 if you are a man. Request a bone test earlier if you have had early menopause, surgical or natural; or had any treatments that lower sex hormones -- estrogen if you are woman, testosterone if you are a man. Etc.
• Shocking Case of Osteoporosis in a Teenager (Diana Swift, MedPage Today, Part 8, 11-8-23) Perifollicular hemorrhage and low vitamin C helped diagnose an old, now rare condition. Her diet, clinicians learned, was usually two slices of dry toast and plain pasta for breakfast, and chocolate rice cakes for lunch and tea. Notably lacking was any red meat, fish, chicken, green vegetables, or fruit. Scurvy, a rare nutritional vitamin C deficiency, "is almost forgotten in developed economies," Khalid and co-authors explained. Thus, this rare instance of symptomatic scurvy in a Caucasian adolescent presented a noteworthy diagnostic challenge.
• Osteoporosis Patients Need Daily Physical Activity and 'Purposeful' Exercise(Diana Swift, MedPage Today, 12-6-23) Serious physical activity and exercise should complement your medical treatment. A mix of exercise types is best to reduce falling and lessen fracture risk. See and illustrated series of safe exercise types is available on the website of the Bone Health and Osteoporosis Foundation. The site also shows videos of the exercises.
• For Your Patients: Exercising With Osteoporosis ( (Diana Swift, MedPage Today) "Activity refers to the functional movements of everyday life such as gardening, housework, going up and down stairs, walking the dog, or carrying home food on foot from the grocery store. While it's important to keep active in these ways, exercise relates to purposeful fitness regimens. These consist of movements designed specifically to raise the heart rate and improve cardiovascular health, as well as increase strength, flexibility, and endurance. This type of exercise includes fast or power walking, workouts on elliptical machines, weight and resistance-band training, sports, and aerobics."
• Nutrition Can't Be Ignored in Osteoporosis (Diana Swift, MedPage Today, Part 11., 12-19-23) As important a component in management as in heart disease. A healthy diet is important for bone health and fracture healing, but supplements may also be needed. Discusses items to include in your diets, and items to avoid. For example, bone is a mineralized connective tissue of which calcium is the major component, conferring bone strength and structure. The efficiency of calcium absorption is significantly enhanced by vitamin D, and in the presence of adequate amounts of this vitamin, intestinal calcium absorption increases to 30-40%.
• Osteoporosis and Oral/ Health (Diana Swift, MedPage Today, 11-20-23) Antiresorptive therapy does not preclude bone-invasive dental surgery, but good dental health is crucial. "Periodontal disease, which causes tooth loss and affects about half the world's population, may share a common underlying inflammatory pathway with osteoporosis. So it may well be a marker for osteoporosis."

Medical Mysteries (an interesting series in the Washington Post's Health Section)

National Dysautonomia Research Foundation (NDRF)

Normal pressure hydrocephalus (often misdiagnosed as Parkinson's or Alzheimer's)

Seborrheic dermatitis and other types of eczema

(and dandruff) See also Eczema

Included here are some slightly off-topic links which I include because people with itchy skin (including eczema) and itchy scalps feel as if they'll go crazy if they can't figure out how to make the itching stop. And the Mayo Clinic recommends starting with home remedies. Scroll down for those.

• The Landscape of New Treatments for Eczema (Greg Laub, MedPage Today, 11-17-23) Systemic and topical. With a strong pitch for "the ADCT, Atopic Dermatitis Control Tool. Six questions, non-branded, patients can do it themselves. Clinicians, when I do telemedicine, I literally read it to the patient. I'm like, let's do it together. We just do it together online. And it is so powerful because it captures a lot of these pieces and it has been validated." See Atopic Dermatitis Control Tool (ADCT)
• 7 Types of Eczema (National Eczema Association) Explained: Atopic dermatitis, contact dermatitis, dyshidrotic eczema, neurodermatitis (also called discoid eczema), nummular eczema, seborrheic dermatitis (which affects your scalp), stasis dermatitis.
Different types of eczema, including atopic dermatitis and contact dermatitis, may have different symptoms, including rash and hyperpigmentation, among others. Treatment can depend on the cause.
• What are the 8 types of eczema (Healthline) Adds Hand eczema. See also Rosacea (Mayo Clinic), another problematic type of skin condition.

• Seborrheic dermatitis (Mayo Clinic) on symptoms and causes, diagnosis and treatment. Also called dandruff, seborrheic eczema and seborrheic psoriasis. For infants, the condition is known as cradle cap and causes crusty, scaly patches on the scalp.

"Your doctor will likely recommend you try home remedies, such as over-the-counter dandruff shampoos, before considering prescription remedies. If home remedies don't help, talk with your doctor about trying these treatments." One common solution among patients with the condition is to try DHS SAL shampoo (a "gentle shampoo that provides relief from psoriasis, dandruff and seborrheic dermatitis symptoms...recommended by physicians to control crust scalp build-up while relieving itching and flaking" -- followed when the condition is more or less under control by DHS Zinc shampoo. Sometimes your dermatologist will give you a sample bottle. Ask!

The Mayo Clinic says to start with home remedies. One that has worked for some: Combine half a cup of organic cider vinegar (Bragg's) and half a cup of warm water on head and let it sit for half an hour. For some, that stops the itching for days! See Seborrheic dermatitis for a fuller Mayo Clinic write-up, with more possible treatments and home remedies, including nonprescription dandruff shampoos, classified according to the active ingredient they contain.

• Disease Management: Pruritus (Cleveland Clinic) Pruritus or itch is defined as an unpleasant sensation of the skin that provokes the urge to scratch. This long, fairly technical explanation is worth a look because so much information is provided economically.

• Biotin, (WebMD), also called vitamin H, vitamin B₇ or vitamin B₈ is a water-soluble B vitamin that plays an important role in the health of your hair, skin, and nails.

• Home treatment for Seborrheic Dermatitis (on Rosacea Forum) Chronic sufferers of the condition talk about treatments (including home remedies) that have and haven't worked for them and are going crazy with itchy scalps. One helpful remedy, shampoo with a mixture of:

1/3 cup water

1/3 cup Bragg's organic unfiltered apple cider vinegar

A couple squirts of Head & Shoulders 2-in-1 Dandruff Shampoo and conditioner,

A tiny splash of Tea Tree Oil

Directions:

1. Mix all ingredients in a cup...

2. Wet hair

3. Apply mixture to scalp, face, and other affected areas (keep out of eyes!)

4. Leave on for a couple minutes and wash off... repeat if necessary.

5. Repeat 3x a week and it will keep dandruff and seb derm at bay.

Scroll down for another list of shampoos geared to oily hair.

• Seborrheic keratoses (American Academy of Dermatology) Includes warning: See a dermatologist if it "Looks dry, flat, rough, and scaly (it could be an actinic keratosis, which can progress to a type of skin cancer)."
• Dry Scalp Vs. Dandruff: Treatments, Shampoos & Remedies (Strong Hair) More explanations and more home remedies, plus links to more material.
• Riboflavin deficiency is a common factor in sebhorric dermatitis. The best food source for riboflavin is brewer's yeast, followed by liver, tongue, heart, and all organ meats, followed by nori seaweed and oily fish such as trout, herring, mackerel, and eel. Smaller amounts are found in milk products, eggs, dried legumes, wild rice, millet, and shellfish--and dark leafy greens. Riboflavin is commonly included in B complex supplements and you can purchase it as a single nutrient.
• Seborrheic dermatitis: Signs and symptoms (American Academy of Dermatology) Signs and Symptoms: Scaly patches on the skin. (These form where the skin is oily.) The skin beneath these patches is reddish. Although scaly, patches often look greasy or moist. Scales can flake off and tend to be yellowish to white.
• Natural remedies for seborrheic dermatitis (Lana Barhum, MedicalNewsToday, 8-26-17) "Seborrheic dermatitis (SD) is caused by an autoimmune response or allergy, and it is not contagious. It is also not curable but can be managed with treatment."
• Atopic dermatitis and seborrheic dermatitis (National Eczema Association)
• What is eczema (atopic dermatitis)? (Rinvoq) Ad-supported, but useful overview.
• Atopic Dermatitis: New Topical Agent, Durable Results With Orals (Charles Bankhead, MedPage Today, 11-2-2020) As many as three fourths of patients with mild-to-moderate atopic dermatitis obtained statistically significant and clinically meaningful improvement treated with once- or twice-daily brepocitinib 1% had more than 70% improvement in the Eczema Area and Severity Index (EASI) after 6 weeks.

• Best drugstore shampoo for oily hair (Jennifer Manfrin, BestReviews, WGN-TV.com, 2-27-24) Do read the reviews, which seem more market copy than scientific report but have high Amazon customer ratings. For now I am listing the products recommended so they're accessible while I shop as I try them out. There is no indicating that they got any Consumer Reports type testing and review but they get many-star reviews on Amazon from lots of customers.
Top moisturizing drugstore shampoos for oily hair

"Because combination hair can be oily at the roots and dry at the ends, a shampoo that controls oil and contains moisturizing ingredients tackles both problems."
---American Crew Daily Moisturizing Shampoo for Oily Hair
---Nexxus Hydra-Light Weightless Shampoo
---Matrix Biolage Cooling Mint Scalp Sync Shampoo
Top clarifying drugstore shampoos for oily hair

"Some drugstore shampoos for oily hair have formulas that remove buildup caused by oil, impurities and hair products."
---Garnier Fructis Pure Clean Fortifying Shampoo
---Paul Mitchell Shampoo Two, Clarifying
Top dandruff control drugstore shampoos for oily hair

"It's common for dandruff to occur with oily hair, as it's often caused by a fungus that thrives on scalp oil. Therefore, some dandruff shampoos are made to control both oil and dandruff."
---Apple Cider Vinegar Shampoo from Bellisso
---Dove Dermacare Anti-Dandruff Shampoo
---Head and Shoulders Clinical Strength Dandruff Defense and Advanced Oil Control Shampoo
Top natural drugstore shampoos for oily hair

"For those who prefer using products made with natural ingredients, the best choice is a shampoo that controls oil with ingredients such as apple cider vinegar and botanicals."
---WOW Skin Science Apple Cider Vinegar Shampoo
---Live Clean Shampoo, Rebalancing Mineral Clay,
---Maple Holistics Degrease Shampoo, often paired with Tea Tree Conditioner (for both oily and dry hair)

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Sepsis, Explained

"Suspect sepsis. Save lives." ~Sepsis Alliance
"Sepsis can rage in response to incidents as seemingly benign as
a playground scrape or a nicked cuticle from the beauty parlor." ~ Sepsis Alliance

• Sepsis, defined (Sepsis Alliance) sep•sis -- "Sometimes called blood poisoning, sepsis is the body's often deadly response to infection....Sepsis has been named as the most expensive in-patient cost in American hospitals in 2011 at over $20 billion each year. Forty percent of patients diagnosed with severe sepsis do not survive. Until a cure for sepsis is found, early detection is the surest hope for survival. Up to 50% of survivors suffer from post-sepsis syndrome."
• Sepsis symptoms (Sepsis Alliance, CDC)
Shivering, fever, or feeling very cold

High heart rate or low blood pressure
Extreme pain or general discomfort ("worst ever")
Pale or discolored skin
Sleepy, difficult to rouse, confused or disoriented
"I feel like I might die"
Shortness of breath.

Clammy or sweaty skin
• What is sepsis? (PDF, Sepsis Alliance) "Everyday, we are exposed to a variety of infectious organisms such as bacteria, viruses, and fungi, through the air we breathe, water we drink, or even cuts and bruises we may acquire. Our immune system is constantly at work identifying and destroying these organisms, thereby keeping us healthy. Sometimes in response to a potentially serious infection, the immune system overreacts and ends up hurting our healthy cells and organs. This is a serious condition called sepsis."
• Sepsis Fact Sheet (CDC)
• New Blood Test May Save Lives by Identifying Sepsis in Minutes (Cyra-Lea Drummond, BSN, RN, VeryWell Health, 1-27-23) The blood test, called IntelliSep, will be available in ERs.

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• The deadliest condition in emergency departments deserves a new diagnostic approach (Tonya Jagneaux, Chadd K. Kraus, and Hollis O’Neal, Kevin MD, 10-13-24) More than one-third of all in-hospital deaths are attributed to sepsis, making it the leading cause of death in U.S. hospitals. Overcrowding, high patient volumes, and limited staff and resources are common challenges in most emergency departments (EDs) today, leading to average wait times of about two-and-a-half hours, with some patients waiting nearly four hours. When symptoms are not definitive – especially in those who appear clinically stable – high-risk patients risk being placed back in the waiting room rather than getting the immediate treatment they need. This is not the ideal approach since the risk of death from sepsis increases by up to 8 percent for each hour that it goes untreated.
• Madonna's ICU Stay May Have Been Due to Sepsis (Rachael Robertson, Enterprise & Investigative Writer, MedPage Today, 6-30-23) Despite being life-threatening, sepsis can be easy to miss. Global superstar Madonna spent time in the intensive care unit (ICU) for what her manager described on Instagramopens in a new tab or window as a "serious bacterial infection" -- which emergency physicians suspect may have been sepsis (bacterial meningitis was also a possibility). "Your immune system is going so haywire that basically a lot of the fluid in your body is leaking out from where it should be, like in your blood vessels, and ... going in all the wrong places and your blood pressure starts to drop," he said. "That's how you die from sepsis. You go into shock."
• When a Loved One Has Sepsis: A Caregiver's Guide (The Sepsis Alliance) Useful online advice.
• Fatal Shock: Avoidable Sepsis Infections Send Thousands of Seniors to Gruesome Deaths (Fred Schulte and Elizabeth Lucas and Joe Mahr, Chicago Tribune, 9-5-18) No one tracks sepsis cases closely enough to know how often these severe infections turn fatal. But the toll — both human and financial — is enormous, finds an investigation by KHN and the Chicago Tribune.
• Would A “Patient-Centered” Sepsis Measure Have Saved This Man’s Arms And Legs? (Michael L. Millenson, Forbes, 1-30-23) At least 1.7 million Americans contract sepsis each year, and 350,000 – about one in five – die, according to the Centers for Disease Control and Prevention. Amputations to save a sepsis patient’s limbs or life happen on average an astonishing 38 times each day, according to the Sepsis Alliance, and the condition’s inpatient and follow-up costs make it the single most expensive medical condition. Hospitals, says Schwartz, need incentives to act quickly when someone comes to the emergency room – “If there’s a chance there could be an infection, why not do a throat swab? – and to promptly call for a consult from a specialist.
• More registered nurse staffing means fewer sepsis deaths (Tara Haelle, Covering Health, AHCJ, 7-22-22) Higher levels of registered nurse staffing are associated with a lower likelihood of Medicare patients' dying from sepsis in hospitals. Nurses can play a crucial role in the prevention and treatment of a wide range of conditions.
• Watch video: What Is Sepsis? (Sepsis Explainer, Kaiser Health News)
• Sepsis is a medical emergency, CDC says. It can be stopped if caught in time. (Arlene Karidis, WaPo, 8-23-16) Symptoms include high fever and chills, rapid heart rate, pale or discolored skin, shortness of breath, confused or disoriented, swelling, extreme pain -- "the worst I've ever felt." The most common illnesses leading to sepsis include pneumonia and infections of the urinary tract, skin and gut, the CDC said in its report. Sepsis can ravage tissue; it causes organ dysfunction, and it kills: According to the CDC, more than 258,000 Americans die of the condition annually, more than the number of deaths from heart attack.
Another symptom is "rigors" -- a sudden feeling of cold with shivering accompanied by a rise in temperature, often with copious sweating, especially at the onset or height of a fever.

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• Saving Carol Decker: Her Nearly-Fatal Fight With Sepsis (Maryn McKenna, Self, 1-12-12) It started with a simple fever, then suddenly spiraled into a whole-body battle for survival. How one woman and her family confronted the frighteningly common threat that causes one in four of this country's hospital deaths. A good story to read because it will scare you into paying attention to the common symptoms of a severe reaction to infection that most of us know nothing about.
• Watchdog group calls for NIH to halt ‘dangerous’ study of sepsis treatment (Sharon Begley, STAT, 8-28-18) Public Citizen, a medical watchdog group, is calling on the National Institutes of Health to immediately stop enrolling people in a clinical trial of sepsis treatment, because the study is so "fundamentally flawed" that it will not produce reliable findings. They contended that patients in the "CLOVERS" trial are “unwitting guinea pigs in a physiology experiment that will not advance medical care for sepsis,” and that other lapses are “stunning in their breadth and scope.” "First, Carome told STAT, patients are being put at risk because one of the two sepsis treatments in the study could, depending on how seriously ill the patients are, allow their blood pressure to remain dangerously low for hours. In addition, he said, everyone will receive what he called an experimental treatment, rather than some patients receiving the standard of care, as clinical trials generally do to enable researchers to compare results for patients treated with experimental and standard treatments....Each year some 1.5 million people in the U.S. develop sepsis, in which an infection cascades into a medical emergency of plunging blood pressure, racing heart, and fever. One-quarter million people die of it annually. Despite the prevalence of sepsis, there is no consensus on how best to treat it...The main divide is between giving patients large volumes of intravenous fluids immediately and then vasopressors, or smaller quantities of IV fluids followed more quickly by vasopressors."
• Pitt Researchers Say States Should Develop Policies To Fight Sepsis (Kathleen J. Davis, WESA, Pittsburgh, 9-8-17) "Sepsis is the leading cause of hospital deaths in the country, killing 250,000 Americans each year. The bacterial infection, colloquially known as "blood poisoning," can be caused by contamination in a hospital setting, and in deadly situations results in organ failure."
• Sepsis: Claiming the lives of thousands (Emily Olson, NewsCenter1, 9-6-17) Sept. is sepsis awareness month. Sepsis is a dysregulated immune response to an infection. Even though sepsis affects more than a million Americans each year and kills up to half of them, only a little more than half of the country's population has heard of the condition.
• How a bacterium that causes flesh-eating disease nearly killed me (Erin Killian, WaPo, 12-2-17) Don’t ignore symptoms. If something feels wrong, it probably is.
• Probiotic Bacteria Could Protect Newborns From Deadly Infection (Michaeleen Doucleff, Goats and Soda, NPR, 8-16-17) Scientists in the U.S. and India have found an inexpensive treatment that could possibly save hundreds of thousands of newborns each year--bacteria common in kimchi, pickles, and other fermented vegetables. The tricky part was figuring out the best strain of bacteria to protect against sepsis. The trial treatment worked so well that the safety board for trial stopped the study early. "The only significant side effect seen in the study was abdominal distension, which occurred in six babies. But there were more cases reported in the placebo group than in the group that got the probiotic."
• The Hollywood Exec and the Hand Transplant That Changed His Life (Amy Wallace, Los Angeles Magazine, 3-29-17) This is a story about a hand transplant, but what brought about the need for a hand transplant was septic shock. "What had caused Jonathan to become so sick? Sepsis isn’t something you catch; it’s triggered by another condition. From the moment Jonathan was admitted, doctors sought to discover what had thrown his system into chaos, ruling out candidates one by one. He didn’t have measles or an antibiotic-resistant staph infection or Lyme disease. He had not been exposed to the Ebola virus. There was evidence that he had antibodies to the Epstein-Barr virus, which can result in chronic fatigue syndrome, but 95 percent of adults have the virus and do not develop complications. Yes, he’d been driving himself hard, but he always did that. Stress had been a lifelong constant. For a while doctors thought he might have a rare bone marrow cancer and started him on a course of chemotherapy. Their strategy: Treat every possibility at the same time. And it had worked. He had survived. Septic shock kills as many as 50 percent of those it afflicts, and those who do die tend to do so quickly."
• What You Need to Know About Sepsis (Nancy L. Snyderman, AARP, Aug/Sept 2013). "While the symptoms of sepsis vary depending on where the infection starts, doctors often look for patients who seem confused or disoriented. Other symptoms include fever, chills, low body temperature, low blood pressure, rapid pulse, decreased urination, nausea and vomiting."
• Sepsis and Cancer (Sepsis Alliance) "Sometimes called blood poisoning, sepsis is the body's often deadly response to infection or injury. Sepsis kills and disables millions and requires early suspicion and rapid treatment for survival." Google the phrase for more on this subject.
• Life After Sepsis Fact Sheet (CDC)

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• Sepsis Leaves Long Legacy on Brain and Body (Crystal Phend, MedPage Today, 10-26-10) "An episode of sepsis boosted the odds of acquiring moderate to severe cognitive impairment 3.3-fold, whereas other types of hospitalizations had no effect, Theodore J. Iwashyna, MD, PhD, of the University of Michigan, in Ann Arbor, and colleagues found...."It would be reasonable to start doing delirium prevention, doing delirium treatment, and doing early mobility," said another expert. "[These] may be even more important than we thought." ..."Reasons for the long-term effects after sepsis might include ICU-acquired weakness thought to be caused by muscle and nerve injury from inflammation and ischemia, as well as by prolonged immobilization and corticosteroid and neuromuscular blockers commonly used in sepsis treatment."
• Frequently Asked Questions About Sepsis and Sepsis Alliance
• Sepsis Questions and Answers (CDC)
• Sepsis Fact Sheet (National Institute of General Medical Sciences)
• Causes of sepsis (NHS, UK) and treatments.
• Sepsis Fact Sheet (National Institute of General Medical Sciences, or NIGMS).
• More RN Hours Linked With Better Sepsis Outcomes (Shannon Firth, MedPage Today, 6-1-22) Facility needs to have enough nurses on staff for such "complex care," researcher warns. "The sepsis patient requires complex care, and if you don't have enough nurses on staff to address those patient care needs, unfortunately, your outcomes are going to be worse."
• Surviving Sepsis Campaign (Society of Critical Care Medicine)

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• Attack of the Killer Sepsis (Al Martinez, AARP, 9-11-13) "Rushed to a hospital emergency room, I was diagnosed with blood poisoning caused by a fecal-based bacteria released into my blood stream by the biopsy" (a routine prostate examination in a doctor’s office).
• Within a day of his eczema being infected Marc was dead (Jo Waters, Daily Mail Online, 2-27-12). "There are 102,000 cases of sepsis (previously known as blood poisoning or septicaemia) each year in Britain and it kills 37,000 people — more than breast, bowel and prostate cancer combined. Sepsis is also the biggest killer of pregnant women...few can spot the warning signs of sepsis. Tragically, it’s often confused with other conditions such as flu and so patients do not receive the right treatment until it’s too late."
• The Politics of Sepsis: From President Garfield to Governor Cuomo (Lisa Suennen, Venture Valkyrie, 1-23-13)' Governor Cuomo has noted that “experts have been calling for action on sepsis for more than a decade, and that simple screening tools used by Kaiser Permanente in California, and Intermountain Healthcare in Utah, two hospital chains, had drastically reduced sepsis mortality rates.” And yet, despite data demonstrating that evidence-based guidelines endorsed by key critical medical associations could reduce death from sepsis by up to 40%, most hospitals are not adhering to them.'
• Faces of Sepsis (compelling, enlightening, and cautionary stories about sepsis survivors and tributes to patients who died from sepsis--and indirectly a how-to and how-not-to manual for all of us, but particularly medical practitioners)
• Faces of Sepsis: Renee Cawley - survivor . She nearly lost her limbs and life, and did lose two fingers. Being bit by a cat or dog when you have no spleen makes you vulnerable to terrible infection.
• She lost her hands and feet to an infection. Now she’s cooking, dancing and traveling again. (Steve Hendrix, WaPo, 11-24-15)
• An Effort to Raise Awareness of Sepsis, Led by Families Touched by It (Jim Dwyer, NY Times, 9-13-14) Dr. Carl Flatley, 23-year-old daughter, Erin, went into septic shock and died after outpatient surgery in 2003, founded the Sepsis Alliance as a way to build awareness of sepsis as a medical emergency. There are simple and effective therapies for sepsis if doctors and nurses suspect sepsis before its rampage picks up speed. But although it affects more than one million people in the United States annually, half of whom die from it, sepsis until recently got little attention from public health leaders, including the Centers for Disease Control."
• Improving the Odds of Surviving Sepsis (Carolyn Beans, NIGMS, Inside Life Science, 8-18-14)
• Seeking the Causes of Sepsis: Life-Threatening Bacterial Infection Remains Mysterious (Emily Carlson, NIGMS, Inside Life Science, 6-15-11)
• Personal stories (some stories of survival, some tributes to the ones who didn't make it, The U.K. Sepsis Trust).

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• Public Health Officials Struggle To Identify Sepsis Before It Becomes Deadly (Michelle Andrews, Kaiser Health News, 8-23-16) “Early treatment is vital,” said Dr. Anthony Fiore, chief of the epidemiology research and innovations branch at the CDC’s Division of Healthcare Quality Promotion. “It’s an emergency that you need to deal with, like heart attack and stroke.” When sepsis advances to septic shock, characterized by severely low blood pressure, each hour of delay in administering antibiotics decreases the odds of survival by an average 7.6 percent, one study found. In 2013, sepsis, or septicemia as it’s sometimes called, accounted for nearly $24 billion in hospital costs, the most expensive condition treated. Up to half of people who get it die.
• Sepsis Study Highlights Risks Of Overly Broad Antibiotic Treatment (Chanu Rhee, Sameer S. Kadri, John P. Dekker, et al, JAMA Network, on CIDRAP, Center for Infectious Disease Research and Policy, 4-21-2020) A large new study of patients with sepsis has found that broad-spectrum antibiotics are frequently administered to patients not infected with antibiotic-resistant pathogens, and are associated with higher mortality in these patients. The study, published last week in JAMA Network Open, looked at data on more than 17,000 culture-positive community-onset sepsis patients in US hospitals and found that more than two-thirds received antibiotics targeting drug-resistant organisms like methicillin-resistant Staphylococcus aureus (MRSA) and Pseudomonas aeruginosa. Yet only in one in eight sepsis patients had resistant gram-positive or gram-negative organisms, respectively. Treatment with unnecessary broad-spectrum antibiotics was associated with a 22% increase in mortality.
• Post-Sepsis Syndrome (PSS), a condition that affects up to 50% of sepsis survivors
• Elderly Urinary Tract Infections (A Place for Mom's excellent overview)
• Sepsis and Urinary Tract Infections (Sepsis Alliance) "Suspect Sepsis. Save Lives." Check out links on that site, but be prepared for anxiety!
• Sepsis (Blood Infection) and Septic Shock (linked to here because UTI can lead to sepsis)
"Septic shock is when an overwhelming infection leads to low blood pressure and the body's organs shut down.
• The Unlikely Connection Between UTIs and Dementia (Dana Larsen, A Place for Mom, 5-14-12). "While a urinary tract infection may be easy to diagnose in a younger woman, an elderly woman’s UTI rarely causes clear symptoms—and may not involve any pain or discomfort. And believe it or not—in addition to being a leading cause of sepsis, a potentially life-threatening infection—UTIs contribute to dementia diseases by making them worse."
• A Norfolk doctor found a treatment for sepsis. Now he's trying to get the ICU world to listen. (Stephen M. Katz, The Virginian-Pilot, 3-23-17) "Marik, chief of pulmonary and critical care at Eastern Virginia Medical School, had recently read medical journal articles involving the vitamin, and decided to order IV infusions of it, along with hydrocortisone, a steroid, to reduce inflammation." He has since added thiamine (vitamin B). The results, for a very small sample, were surprising.
• Sepsis and Pneumonia (Sepsis Alliance) "The most common source of infection, among adults, is the lung or lungs.""

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Paraplegia, quadriplegia, and spinal cord injuries and disease
• The National Spinal Cord Injury Association (NSCIA)
• WE MOVE, Worldwide Education and Awareness for Movement Disorders
• MedStar National Rehabilitation Network
What is a physiatrist? (National Spinal Cord Association). Physiatrists are doctors certified as specialists in rehabilitation medicine by the American Board of Physical Medicine and Rehabilitation. They are trained in the diagnosis and treatment of physical disability.
• American Academy of Physical Medicine and Rehabilitation . See what they say about Physiatrists, or rehabilitation physicians , nerve, muscle, and bone experts who treat injuries or illnesses that affect how you move.
• Association of Academic Physiatrists
• SPINALpedia.com blog (a social mentoring network and video archive, UK)
• Quadriplegic Dad Shares Joys, Challenges Of Raising Triplets (Rebecca Sheir, Metro Connection, WAMU, NPR, 6-14-13)

Polycystic Ovarian Syndrome (PCOS) What is it? (UCSF National Center of Excellence for Women's Health)
• PCOS (Richard Scott Lucidi, MD, Medscape, 8-11-16)
• The effect of a healthy lifestyle for women with polycystic ovary syndrome (Moran LJ, Hutchison SK, Norman RJ, Teede HJ. Cochrane (reports on evidence-based medicine). 7-6-11) "Lifestyle intervention improves body composition, hyperandrogenism (high male hormones and clinical effects) and insulin resistance in women with PCOS. There was no evidence of effect for lifestyle intervention on improving glucose tolerance or lipid profiles and no literature assessing clinical reproductive outcomes, quality of life and treatment satisfaction."

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Polycystic kidney disease (PKD). See Kidney disease.

Primary ciliary dyskinesia (PCD). Read and/or listen to Terry Gross's interview with Laurie Edwards on Fresh Air (NPR, 4-9-13) "Laurie Edwards has a chronic respiratory disease so rare that she's met only one other person who has it — and that was through the Internet. In and out of hospitals her entire life, Edwards, now 32, wasn't accurately diagnosed until she was 23. Before they correctly identified her condition — primary ciliary dyskinesia (PCD), which is similar in some ways to cystic fibrosis — doctors thought she might be an atypical asthma patient, that she wasn't taking her medications correctly, or that her symptoms were perhaps brought on by stress."
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Postural orthostatic tachycardia syndrome (POTS)

• Postural orthostatic tachycardia syndrome (POTS) (Cleveland Clinic) is a condition that affects blood flow. POTS causes the development of symptoms -- usually lightheadedness, fainting and an uncomfortable, rapid increase in heartbeat -- that come on when standing up from a reclining position and relieved by sitting or lying back down. A very helpful page.
• Though No Cure for POTS, Symptoms Can Often be Effectively Managed (Mayo Clinic News Network, 6-11-10)
• I Had POTS Syndrome But Was Misdiagnosed With Anxiety (Charlotte Hilton Andersen, The Healthy, 2-10-21) "My racing heart, exhaustion, nausea, chest pain, and salt cravings turned out to be symptoms of postural orthostatic tachycardia syndrome, a condition that most often occurs in young women....My breaking point came during a Zumba class. At sea level, dancing was something I did for fun and for recovery but never really considered much of a workout. In Colorado, it was all I could do just to finish the class. On that fateful day I just couldn’t do it....Patients often report it as a heart or neurological problem but POTS is actually a disorder of the autonomic nervous system, the part of the body that regulates necessary-to-life systems like blood pressure, heart rate, breathing, digestion, urination, and even sexual arousal."

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Shingles (herpes zoster)

Do NOT put off getting the shingles vaccine!

You'll kick yourself if and when you develop a condition nobody welcomes.

• Important Reasons to Get the Shingles Vaccine (Hillary Murtha, Brain and Life, 12-18). Buy through GoodRX and save

• Shingles: Hope Through Research (National Institute of Neurological Disorders and Stroke, or NINDS) Probably the best single page of Q&A to read on the topic."Shingles is the reactivation of a viral infection in the nerves to the skin that causes pain, burning, or a tingling sensation, along with an itch and blisters in the skin supplied by the affected nerve. It is caused by the varicella zoster virus, or VZV—the same virus that causes chickenpox. When the itchy red spots of childhood chickenpox disappear, the virus remains in a dormant state in our nerve cells, ready to strike again in later life. This second eruption of the chickenpox virus is called shingles or herpes-zoster.
"You cannot develop shingles unless you have had an earlier exposure to chickenpox. Shingles occurs when an unknown trigger causes the virus to become re-activated. Most adults who have the dormant virus in their body never get shingles."
• How is shingles treated? (NINDS, continued) Attacks "can be made less severe and shorter by using prescription antiviral drugs such as acyclovir, valacyclovir, or famcyclovir as soon as possible after symptoms begin. Early treatment can reduce or prevent severe pain and help blisters dry faster. Antiviral drugs can reduce by about half the risk of being left with postherpetic neuralgia, which is chronic pain that can last for months or years after the shingles rash clears. Doctors recommend starting antiviral drugs at the first sign of the shingles rash, or if the telltale symptoms indicate that a rash is about to erupt. Other treatments to consider are anti-inflammatory corticosteroids such as prednisone. These are routinely used when the eye or other facial nerves are affected.
• Postherpetic neuralgia (post-hur-PET-ik noo-RAL-juh) is a complication of shingles, which is caused by the chickenpox (herpes zoster) virus. Postherpetic neuralgia affects nerve fibers and skin, causing burning pain that lasts long after the rash and blisters of shingles disappear. (Mayo Clinic)
• Shingles: Hope Through Research (fact sheet, National Institute of Neurological Disorders and Stroke, NINDS) Shingles is more likely to strike in those over 60 (among other important statements).

Also discussed: How can shingles be prevented? What is postherpetic neuralgia? What are other complications of shingles? Where can I find more information about research on shingles? See its useful Glossary
---How to Treat Nerve Pain After Shingles (WebMD, 8-11-21) A useful Q&A. For most people, the symptoms of shingles usually fade away along with the rash that may have appeared along one side of their body or face. But for some, pain persists long after their skin has cleared. It’s called postherpetic neuralgia, and it’s a complication of shingles. You might feel intense sensations of tingling, burning, and shooting that don’t let up. This could last for 3 months or longer, and you could be sensitive to touch and have trouble wearing clothes.

• Shingles (NIH Senior Health) Fifty percent of all Americans will have had shingles by the time they are 80. While shingles occurs in people of all ages, it is most common in 60- to 80-year-olds. Read this for info on relationship between chicken pox and shingles exposure.
• What Is Shingles, and How Do You Get It? (Tiffany Chioma Anaebere, MD, GoodRx, 2-7-22) Shingles is a painful rash caused by reactivation of the varicella-zoster virus, the same virus that causes chickenpox. If you've had chickenpox, the virus remains inactive in your body but can reactivate later, causing shingles. Older age and a weakened immune system significantly increase your risk of developing shingles, which is so common that about 1 in 3 adults in the U.S. will get it in their lifetime. Shingles will heal on its own, but starting antiviral medications early can help speed up healing and reduce pain. Symptoms, how it's diagnosed and treated, its three stages.

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• CDC Panel Recommends a New Shingles Vaccine (Sheila Kaplan, NY Times, 10-25-17) CDC recommends a new vaccine to prevent shingles over an older one that was considered less effective. The new vaccine, called Shingrix and manufactured by GlaxoSmithKline, is recommended for adults ages 50 and older. The panel’s recommendation gives preference to the new vaccine over Merck’s Zostavax, which has been the only shingles vaccine on the market for over a decade and was recommended for people ages 60 and older. The disease, also known as herpes zoster, can range in severity from barely noticeable to debilitating. It is caused by the varicella-zoster virus, which also causes chickenpox. GlaxoSmithKline said its new vaccine would cost about $280 and would be available next month. Zostavax costs about $223. [Those are 2017 prices.]

Yes, you do want the new vaccine even if, years ago, you got the first shingles vaccine.
• Medicare and the Shingles Vaccine: Are You Covered? (Value Penguin) "The shingles vaccine is covered under your prescription drug benefits through Medicare Part D or Medicare Advantage. However, your actual cost and coverage will depend on the specifics of your plan. If you don't have a prescription drug plan, the full price for two doses of the Shingrix vaccine is $324, and several cost-saving options can help you get Shingrix for less."
• Shingles and Stroke Risk (Serena Gordon, HealthDay, WebMD, 1-3-14) "People who've had shingles -- a viral infection also known as herpes zoster -- before age 40 may have a higher risk of stroke years later, a large new study suggests. Adults who get shingles after 40 don't have an increased risk of stroke. But along with those who had shingles before 40, they do have a higher risk of heart attack and "transient ischemic attack" (TIA), sometimes called a mini-stroke, the study authors said."
• Shingles: What You Should Know ( Sabrina Felson, WebMD 2-17-23) Includes illustrations and lists factors that might increase your risk of getting shingles (especially having a weakened immune system).

Also, shingles can have complications that last long after the rash is gone, including:

---Brain inflammation or facial paralysis if it affects certain nerves

---Eye problems and vision loss if your rash was in or around your eye

---Pain that lasts long after the outbreak, called postherpetic neuralgia. It affects up to 1 in 5 people who get shingles.

"You’re contagious until all of the sores have crusted over. Until then, avoid pregnant women who may not have had chickenpox or the vaccine, people with weak immune systems, and newborns."

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• New study alters long-held beliefs about shingles (Mayo Clinic, ScienceDaily, 2-1-11) "For decades, medical wisdom about shingles has been that it's a once-in-a-lifetime experience. The commonly held belief is that patients are protected from a recurrence of the herpes zoster virus, which causes shingles, after one episode. But according to a new study, recurrences of shingles may be significantly more common than doctors have suspected."
• What to know about reporting on shingles (Liz Seegert, Covering Health, Association of Health Care Journalists). A thorough overview.
• Preventing Shingles and Its Complications in Older Persons (New England Journal of Medicine, 9-15-16).
• Older Adults Are Still Skipping Vaccinations (Paula Span, NY Times, 12-2-16) By not being vaccinated, older adults are exposing themselves to higher risk from shingles; tetanus, diphtheria and whooping cough (Tdap vaccine); and flu, all of which can hit harder in old age. "Shingles results from the same virus that causes chickenpox, which nearly all older Americans have had. The virus typically remains dormant for decades, but the odds of its reactivation rise steeply after 50 as the immune system weakens. The lifetime risk of shingles is one in three, rising to one in two for those over 85." “Don’t delay, as the consequences of shingles can be devastating,” advises Consumer Reports’ medical director, Orly Avitzur, a neurologist who has seen firsthand the painful effects of lingering nerve damage. See Why Does My Shingles Vaccine Cost So Much? (typically about $200, Theresa Carr, Consumer Reports, 4-28-17) See Carr's suggestion for possible ways to save money.
• Shingles Risk 70% Higher for Adults With Asthma (Marcia Frellick, Medscape Medical News, 1-6-16) Reasons for the connection are unclear, but impairment in immune function in the skin and airways has been well-documented in patients with asthma or atopic dermatitis, the authors say. They reason that because asthma helps suppress adaptive immunity, it may increase the risk for varicella zoster virus reactivation.
• Treating Shingles (Shengping Zou and Steven Ropers, Today's Geriatric Medicine, May/June 2013)
• Shingles in Alberta: Before and after publicly funded varicella vaccination. (Russell ML, Dover DC, Simmonds KA, Svenson LW, PubMed 10-4-13). "The declining rates of shingles among persons under the age of 10 years are consistent with an impact of the chickenpox vaccination program. The trend of increasing rates of shingles among older persons began prior to implementation of vaccination."
• Why are ever-younger adults contracting shingles? (Julia Belluz, MacLean's, 8-16-2010) It has to do with reduced exposure to chicken pox.

• The Prevalence of Shingles Among Older Adults in the US. (The Gerontologist, 2016)

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Sickle cell disease

• Sickle Cell Math Is Brutally Simple, but Not Widely Taught (Gina Kolata, NY Times, 12-28-21) An inexpensive blood test can warn couples if they face one in four odds of having a baby with the disease. No one ever told Lametra Scott and Rickey Buggs about it. Rickey Buggs, 9, often has pain in his shins caused by sickle cell disease.
• Few Sickle Cell Disease Patients Are Adequately Treated for Pain (Mike Bassett, MedPage Today, 3-8-23) Despite the availability of medications designed to prevent vaso-occlusive events in persons with sickle cell disease (SCD), few who experience these chronic pain episodes have prescriptions for these drugs, researchers found. Under 4% of patients with SCD who are eligible for these medications were found to have prescriptions for either L-glutamine (Endari), crizanlizumab (Adakveo), or voxelotor (Oxbryta), all of which have been FDA approved since 2017. And less than one-third of SCD patients had prescriptions for hydroxyurea, a drug commonly used to reduce pain caused by the disease.
• Cutting-edge gene therapies could be coming for sickle cell. Will Medicaid patients be able to access them? (Ed Silverman, Pharmalot, STAT News, 3-14-22) U.S. regulators may soon approve two gene therapies – one developed by Vertex Pharmaceuticals, and another by Bluebird Bio – to treat sickle cell disease, an inherited group of blood disorders that affect an estimated 100,000 Americans. The condition is particularly prevalent among Black people, with 1 of every 365 Black individuals in the U.S. born with the condition, which can cause significant pain, infections, and lead to an early death. A gene therapy holds the promise of eradicating the illness with potentially just one treatment. But gene therapies are widely expected to come with a high price tag — and it’s estimated that roughly 40% of sickle cell patients are covered by Medicaid. That is raising concern that state Medicaid officials may soon face a struggle for coverage. .
• Are We About to Cure Sickle-Cell Disease? (Dhruv Khullar, New Yorker, 3-22-22) New gene therapies hold extraordinary promise, but they might not be enough to overcome a medical system that marginalizes Black Americans.
• Could gene therapy cure sickle cell anemia? (Jonathan LaPook, 60 Minutes, CBS, 12-29-19) An NIH clinical trial is ushering in a genetic revolution as an innovative type of gene therapy is used to attempt to cure sickle cell anemia. Dr. Jon LaPook reports. Watch online. See also New Gene Therapy Shows Promise For Patients With Sickle Cell Disease (Karen Weintraub, WBUR, 3-18-19) The new approach uses gene therapy to provide the same benefits as a bone marrow transplant, without the risk of rejection – because the patient gets back their own blood, says David Williams, chief scientific officer of Boston Children’s, who is leading the trial.
• More on the trial aiming to cure sickle cell (60 Minutes Overtime, 10-11-20) Correspondent Dr. Jon LaPook's 2019 conversation with 60 Minutes Overtime's Ann Silvio about his story on a gene therapy trial that may be a cure for sickle cell anemia.
• Could gene therapy cure sickle cell anemia? (Dr. Jonathan LaPook, 60 Minutes, CBS, 7-26-2020) An NIH clinical trial is ushering in a genetic revolution as an innovative type of gene therapy is used to attempt to cure sickle cell anemia.
• AAAS Kavli Science awards went to these three articles:
---A Young Mississippi Woman's Journey Through A Pioneering Gene-Editing Experiment (Rob Stein, Shots, NPR, 12-25-19) In three stories from NPR’s “All Things Considered,” Rob Stein and his colleagues Joe Neel and Jane Greenhalgh told the story of Victoria Gray, a patient with sickle cell disease who received the first use of a groundbreaking new CRISPR treatment for her genetic disorder. Read
---In a 1st, Doctors In U.S. Use CRISPR Tool To Treat Patient With Genetic Disorder (Rob Stein, Morning Edition, NPR, 7-29-19)
---A Year In, 1st Patient To Get Gene Editing For Sickle Cell Disease Is Thriving (Stein, Morning Edition, 6-23-2020) Gray is the first person with a genetic disorder to get treated in the United States with the revolutionary gene-editing technique called CRISPR.

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•Why Are Therapeutics Still Lagging for Sickle Cell Disease? In Short, Systemic Racism (Meryl Bailey, Healty City. Boston Medical Center, 9-28-2020) Structural racism has neglected advancements in SCD treatment. Novel therapies are on the horizon, but can they affordably be brought to the masses? Cystic fibrosis, primarily a white disease, affects less than one-third the number of Americans that sickle cell disease does, but receives 7 to 11 times the research funding per patient.
• ‘Every time it’s a battle’: In excruciating pain, sickle cell patients are shunted aside (Sharon Begley, STAT, 9-18-17) 'The U.S. health care system is killing adults with sickle cell disease. Racism is a factor — most of the 100,000 U.S. patients with the genetic disorder are African-American — and so is inadequate training of doctors and nurses. And the care is getting worse, sickle cell patients and their doctors said, because the opioid addiction crisis has made ER doctors extremely reluctant to prescribe pain pills....

"Only 20 percent of family physicians say they feel comfortable treating sickle cell disease, a 2015 survey of more than 3,000 such physicians found, leaving many patients without routine, preventive care. They are therefore more likely to seek care in ERs during an acute sickle cell episode, called a vaso-occlusive crisis, in which an inadequate blood supply triggers excruciating pain and damages vital organs....But an immediate cause of early death is a catastrophic failure to give sickle cell patients competent care. The mortality rate for adults with the disease has risen 1 percent every year since 1979, the hematology society reported in 2016. Half of adult sickle cell patients are dead by their early 40s. (Children fare better.)...Racial bias makes matters worse. Numerous studies have found that black Americans receive less pain treatment than whites, often because physicians and nurses hold false beliefs such as “black skin is thicker.”'
• Global Blood secures FDA approval for new pill to treat sickle cell disease (Adam Feuerstein, STAT, 11-25-19) Oxbryta will cost $125,000 per year before discounts, Global Blood said. Oxbryta was approved based on results from a clinical trial that enrolled 274 patients with sickle cell disease and treated them with one of two doses of Oxbryta or a placebo.
• Sickle Cell Patients Suffer Discrimination, Poor Care — And Shorter Lives (Jenny Gold, KHN, 11-6-17) About 100,000 people in the United States have sickle cell disease, and most of them are African-American. In 1994, life expectancy for sickle cell patients was 42 for men and 48 for women. By 2005, life expectancy had dipped to 38 for men and 42 for women. Sickle cell disease is “a microcosm of how issues of race, ethnicity and identity come into conflict with issues of health care,” said Keith Wailoo, a professor at Princeton University, and author of Sickle Cell Disease — A History of Progress and Peril (Keith Wailoo, New England Journal of Medicine, 3-2-17) Studies have found that sickle cell patients have to wait up to 50 percent longer for help in the emergency department than other pain patients. The opioid crisis has made things even worse, Vichinsky added, as patients in terrible pain are likely to be seen as drug seekers with addiction problems rather than patients in need.
• Sickle Cell: In Step Toward Genetic Fix, Scientists Pinpoint ‘Achilles Heel’ Of Sickle Cell Disease (Carey Goldberg, CommonHealth: Reform and Reality, 9-21-15) Medical scientists may find ways to use genome-editing technology to turn an "off" switch into an "on" switch. Hopes are biotech companies can begin trying gene therapy in clinical trials.
• Sickle Cell: An Unpredictable Adversary (Boston Globe, 11-19-16)
• The A1C Blood Sugar Test May Be Less Accurate In African-Americans (Richard Harris, All Things Considered, NPR, 2-7-17) Doctors have been cautioned before that results from the A1C test [for diabetes] don't have pinpoint accuracy. A study published Tuesday underscores that shortcoming as it applies to people who carry the sickle cell trait.

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Sjögren's syndrome

("SHOW-grins"). Sjögren’s is an autoimmune disease that causes dryness in the body.
• Patient Voices: Sjögren’s Syndrome (NY Times). A relatively unheard of disease that is difficult to diagnose. Causing a strange constellation of symptoms, which may include dry eyes, dry mouth, joint pain, chronic fatigue or even organ inflammation. Here, five men and women speak about living with this condition.
• Sjögren's Syndrome Foundation. Become an SFF member and receive the "Moisture Seekers" newsletter. (Download a sample free and check out the Conquering Sjögren's blog.
• Sjögren's Syndrome (Medline Plus)
• Tennis Star Venus Williams Opens Up about Living with Sjogren's (Sjögren's Syndrome Foundation, 7-12-13) "Early diagnosis and treatment are important for preventing complications with Sjögren’s. Unfortunately, reaching a diagnosis is often difficult and has been found to take an average of over 4.7 years.

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Rosacea
• Rosacea Society (research results, practical information, and other resources)
• Rosacea (American Academy of Dermatology, geared to medical professionals)
• The Rosacea Forum, in which patients themselves share their experiences, good and bad, and tips about what worked (or didn't) for them.

Research results for the public (NIH)

Resource directory (Healingwell.com)

Restless Legs Syndrome Foundation

Search clinical trials at NIH

Service dog placement for children with autism (North Star Foundation)

Sleepy Dust -- for patients with ME/CFS (Myalgic Encephalopathy, Chronic Fatigue Syndrome, Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), or Post Viral Fatigue Syndrome (PVFS)

Systemic capillary leak syndrome (SCLS), or Clarkson's disease. Sharing the Pain: Rare Disease Puts an AU Economist in Touch With Fellow Patients Around the World (Sindya N. Bhanoo, Health Section, Washington Post, 2-10-09) "in 2005, at age 56, Porzecanski was told he had an extraordinarily rare disease called systemic capillary leak syndrome (SCLS), or Clarkson's disease. Characterized by sudden attacks that cause a rapid drop in blood pressure, the disease can lead to multiple organ failure -- and death -- within hours. Porzecanski's first attack left him disabled, and doctors told him it was probably only a matter of time before another attack killed him. He waived his rights to privacy and asked doctors to help him locate fellow sufferers. Then he discovered RareShare, a website for men and women who needed to find somebody somewhere in the world who knew what they were going through. His is a story "about how a few people coming together can make a difference. And that while a disease may affect only a few, it is hardly insignificant."

Stuttering (stammering)

"This evolution in treatment has been accompanied by a new movement to destigmatize the disorder, similar to the drive to view autism through a lens of "neurodiversity" rather than as a pathology."

• The Campaign Volunteer Who Stuttered (Adam Giannelli, Washington Post, 2-17-19) How canvassing helped me embrace my political voice — and my actual one. I realized that I wasn’t calling in spite of my stutter — simply because these are momentous political times and civic engagement is vital. I was calling because of my stutter.
• What Joe Biden Can’t Bring Himself to Say (John Hendrickson, The Atlantic, Jan-Feb 2020) His verbal stumbles have voters worried about his mental fitness. Maybe they’d be more understanding if they knew he’s still fighting a stutter.

"Stuttering is a neurological disorder that affects roughly 70 million people, about 3 million of whom live in the United States. It has a strong genetic component: Two-thirds of stutterers have a family member who actively stutters or used to. Biden's uncle on his mother's side—"Uncle Boo-Boo," as he was called—stuttered his whole life." An excellent explanation and a good 'long read.' You can also listen to Joe Biden's Stutter (NPR's Lulu Garcia-Navarro talks with John Hendrickson on Weekend Edition, 11-24-19)
• Friends. The National Association of Young People Who Stutter. Here are some articles for parents.
• StutterTalk (changing how you think about stuttering...one podcast at a time)
• The Stuttering Foundation offers many resources, including Famous People Who Stutter
• British Stammering Association (BSA)
• Support organizations for people who stutter

• Every Waking Moment: The Journey to Take Back My Life from the Trauma and Stigma of Stuttering by Christopher Anderson. "Riveting, gut-wrenching and exhilarating, Every Waking Moment reads like a novel and holds the value of a therapy book." For stutterers and therapists.
• Learning to Love to Stutter (Emma Alpern, The Atlantic, 9-25-15) The organizers of an annual conference for stutterers argue that the condition should be considered just another way of speaking, rather than something that needs to be treated.
• Stammer Time (Barry Yeoman, The Baffler, Nov 2019) Barry's wonderful long article about the new way to think about disability--the non-medical model, which also applies to people with autism. 'The search for a “cure” feels wrongheaded: more like a homosexuality cure than a cancer cure.' Full of links to further reading.
• Did I Stutter? (a space for community, art, and discussion where stutters and other speech dysfluencies can be rethought in affirming ways -- alternative ways of thinking about speech and communication disabilities)
• Genetic contributions to stuttering: the current evidence (Carlos Frigerio-Domingues & Dennis Drayna, Molecular Genetics and Genomics) Evidence in mice studies.
• If You Stutter, You Are Not Alone (National Stuttering Association)
• Passing Twice (an informal network of gay, lesbian, bisexual, and transgender persons who stutter and their friends)
• Five Myths About Stuttering (The Stuttering Foundation)
• Finding My Voice (Barry Yeoman, reprinted in Saturday Evening Post May-June 2014)
• When You Talk Over My Stutter, You Steal My Voice (Spring Kwok, Narratively, 2-19-18) "All people see is that I'm freezing up. But that space between my words is mine to fill."
• Special Effects Story (Kevin Murphy, This American Life, Act 2, Recording 203) College student Kevin Murphy tells about using the power of radio editing to put together a message he can use to order pizza.
• Therapy referral lists of speech-language pathologists (therapists) (The Stuttering Foundation)
• Board-Recognized Fluency Specialists (StutterTalk)
• Our Time (helping kids who stutter)
• Journalist, Interrupted (Barry Yeoman, 12-21-2001). "Why my stutter makes me a better reporter."
• An Unlikely Speaker: On Stuttering and the Memoir (Katherine Preston, The Millions, 8-28-13). By the author of Out With It: How Stuttering Helped Me Find My Voice. “A frank, encouraging, and fresh exploration of a problem that's more widespread than we think."--Margaret Drabble
• Reporting from the 10th World Congress for People Who Stutter (podcast from Netherlands, Ep. 401, 6-10-13, Day 1 with David Mitchell, author of the coming-of-age novel Black Swan Green
• Public Speaking, Stuttering and Doing What You Fear ((Ep. 400 of StutterTalk podcasts, 6-5-13)
• Singing and stuttering: what we know (The Stuttering Foundation). "Understanding what dramatically reduces stuttering during singing may eventually help us understand stuttering better..."
• Jezer, Marty. Stuttering: A Life Bound Up in Words. Here's Randy Holhut with Storied Writer and Activist Jezer Dies (Common Dreams, 6-13-2005) "Question authority." "Keep singing."

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Temporomandibular Joint (TMJ) Disorders
• TMJ Disorders (National Institute of Dental and Craniofacial Research, or NIDCR)
• TMJ disorders (Mayo Clinic's brief entry has a useful illustration)
• TMJ exercises (Healthline)
Temporomandibular Joint Disease (Penn Medicine Center) for patients with dysfunction of the temporomandibular joint (TMJ).
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West Nile virus

• West Nile Virus (Centers for Disease Control and Prevention)
• Q&A about West Nile virus (New York Times, 8-25-12) "The outbreak of West Nile virus this year [2012]has spread to nearly every state and is shaping up to be the largest one on record since the first human cases were reported in the United States in 1999.
• West Nile virus fact sheet (PDF, CDC,
• Recommendations for Protecting Laboratory, Field, and Clinical Workers from West Nile Virus Exposure (download from CDC)
• West Nile outbreak largest ever in U.S. (Elizabeth Cohen, CNN, 8-23-12) Five things you need to know about WNV: 1) Most mosquitoes do not carry West Nile. 2) Most people bit by West Nile mosquitoes do not get sick. 3) You can help prevent West Nile with the "four Ds." (See article for details.) 4) People over 50 are most vulnerable. 5) Seek medical care immediately if you have severe headaches or confusion.
• West Nile Virus (NIH, National Institute of Allergy and Infectious Diseases)
• A caregiver's sacrifice (Beth Macy's account of how Linda Rhodes copes when illness--West Nile virus--precipitates her husband’s mental decline)
• In 'Monsters,' Graphic Novelist Emil Ferris Embraces The Darkness Within (Fresh Air, 3-30-17). Terry Gross interviews Ferris about how she began writing and drawing My Favorite Thing Is Monsters after she was bitten by a mosquito that infected her with West Nile virus. The virus left her paralyzed, but eventually she regained some use of her right hand and learned to draw again by duct-taping a quill pen to her hand. Looking back, she says the book never would have been written had she not contracted West Nile.

When Doctor Visits Lead to Legal Help (Erik Eckholm, NY Times, 3-23-10) Medical care alone is not enough to address the health woes of the poor, which are often related to diet, living conditions and stress. Doctors at Children’s Hospital, "using a protocol that started 18 months ago, referred 500 patients for legal aid last year. Some needed help getting food stamps, heating aid or cash welfare that had been wrongfully denied; some received help with evictions or home repairs; others got legally mandated help for children with learning disabilities."

Stroke

Act FAST. Time lost is brain lost. FAST is an acronym to help you remember and recognize the signs of stroke:
Face drooping– Does one side of the face droop or is it numb?
Arm weakness – can they raise both of their arms above their head? Does one arm drift downward?
Speech difficulty– is their speech slurred? are they hard to understand?
Time to call 9-1-1 and get them to the hospital immediately. Do not delay.
• What happens during a stroke (Jacque Wilson, CNN, well illustrated, 2-17-13)
• What Is Stroke? (National STROKE Association)
• Stroke (NCBI)
• Stroke Caregivers Handbook (Joyce Dreslin, StrokeSAFE, read online, or download the PDF
• Recovery After Stroke: Coping with Emotions (National Stroke Association)
• Recovering After Stroke (MedlinePlus)
• Stroke Rehabilitation: What to Expect After a Stroke (WebMD)
• Relationships; Families as Victims of Stroke (Georgia Dullea, NY Times, Style, 5-9-83)
• Therapeutic Writing: Life Stories Punctuated by Healing (Carol Keegan, stroke survivor, Stroke Connection, Spring 2013)
• Fact Sheet: Coping psychologically after a stroke (PubMed Health, 12-21-12)
• Stroke (NY State Dept of Health fact sheet). Reduce stroke risk by reducing risk factors: high blood pressure, carotid or coronary artery disease, atrial fibrillation (irregular heart beat), diabetes, tobacco use, and elevated levels of cholesterol, excessive alcohol use, and (risk factors that can't be changed:) prior transient ischemic accident (TIA) or previous stroke, age, genetic heritage/family history, race (African Americans are at much greater risk, partly because of high blood pressure, diabetes, and obesity). Fatty deposits in blood vessels cause the majority of stroke cases. High blood pressure is the leading cause of stroke, according to the American Stroke Association. "Stroke is more common in men than in women. In most age groups, more men than women will have a stroke in a given year. However, more than half of total stroke deaths occur in women. At all ages, more women than men die of stroke. Use of birth control pills and pregnancy pose special stroke risks for women."
• After the Stroke by May Sarton. The poet's journal about recovering from a mild stroke when she is in her seventies.
• The Diving Bell and the Butterfly: A Memoir of Life in Death by Jean-Dominique Bauby. Immobilized by a stroke, the narrator discovers the life of the unfettered imagination.
• Jill Bolte Taylor's stroke of insight. Fascinating, informative, inspirational TED talk (on video), partly about how the brain works. Taylor (whose brother has schizophrenia) got a research opportunity few brain scientists would wish for: She had a massive stroke, and watched as her brain functions -- motion, speech, self-awareness -- shut down one by one. You can also read her book: My Stroke of Insight: A Brain Scientist's Personal Journey (a story that provides hope for the brain-injured, not just those who have had a stroke, as this young brain scientist did)
• Remind Me Who I Am, Again by Linda Grant. About how her mother's vascular dementia (brought on by small strokes) exacerbates Grant's troubled relationship with the woman.

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Sleep-deprived brains alternate between normal activity and ‘power failure’ (labspaces.net)

Tuberculosis (TB)

"Tuberculosis (TB), a bacterial infection that mainly infects the lungs, is believed to have caused more deaths than famines and wars combined. Although it is often seen as an ailment of the past, a total of 1.4 million people died from TB in 2019. "About one-quarter of the world's population may be infected with latent tuberculosis, in which the bacterium infects a person but produces no symptoms unless it progresses to active disease, when the patient becomes highly contagious. Overall, a relatively small proportion (5 to 15 percent) of the estimated 2 to 3 billion people infected with TB will develop TB disease during their lifetime. However, if a person's immune system becomes weakened, the TB bacteria are much more likely to multiply, spread and cause active disease. People living with HIV are more likely than others to become sick with TB. Worldwide, TB is one of the leading causes of death among people living with HIV."~ Science Writers in New York, inviting science writers to a virtual conversation with Thierry Bernard and Davide Manissero on July 13, 2021.

• The Path to a Better Tuberculosis Vaccine Runs Through Montana (Jim Robbins, KFF Health News, 4-18-24) A team of Montana researchers is playing a key role in the development of a more effective vaccine against tuberculosis, an infectious disease that has killed more people than any other. TB vaccines so far are only 50% effective.
• Ending TB Is Within Reach — So Why Are Millions Still Dying? (Stephanie Nolen, NY Times, 11[-6-23) Tuberculosis, which is preventable and curable, has reclaimed the title of the world’s leading infectious disease killer, after being supplanted from its long reign by Covid-19. But worldwide, 40 percent of people who are living with TB are untreated and undiagnosed, despite new medicines and better diagnostic tools. The disease killed 1.6 million people in 2021."
Still, "this is a moment of great hope in the fight against TB: Significant innovations in diagnosing and treating it have started to reach developing countries, and clinical trial results show promise for a new vaccine. Infectious disease experts who have battled TB for decades express a new conviction that, with enough money and a commitment to bring those tools to neglected communities, TB could be nearly vanquished.
"New medications — the first to come to market since the 1970s — can be taken as just a couple of pills each day, rather than as handfuls of tablets and painful injections, the way TB treatments have been delivered in the past....In Ghana and most other countries with a high prevalence of TB, the drugs are paid for by the Global Fund to Fight AIDS, Tuberculosis and Malaria, an international partnership that raises money to help countries fight the diseases. But contributions to the agency have been getting smaller with each funding round. Countries fighting TB are concerned about what may happen if that funding ends. Currently, the treatment for adults recommended by the W.H.O. costs at least $150 per patient in low- and middle-income countries."
• TB reclaims title of deadliest infectious disease. That's an 'outrage' says WHO (Fran Kritz, Goatds and Soda, NPR, 11-7-24) In 2020, COVID-19 was responsible for 3.5 million deaths worldwide vs 1.5 million for TB.The 2024 Global Tuberculosis Report, published last week by the World Health Organization, puts TB back in the top slot with 1.25 million deaths in 2023 compared to 320,000 COVID-19 deaths. There's also been an increase of hundreds of thousands of new TB cases in 2023 compared to the year prior. Approximately 8.2 million people were newly diagnosed with TB in 2023 — the highest number since WHO began global TB monitoring in 1995 and a “notable increase” from 7.5 million people newly diagnosed in 2022. There are large funding shortfalls for TB research as well as prevention, detection and treatment services. To close these gaps, more funding is needed from both domestic sources in the countries most impacted by TB and from international donors.”
• The Other Pandemic: Why TB Deserves Your Attention (Annalise Winny, Johns Hopkins Bloomberg School of Public Health, 8-15-22) TB is preventable and curable—yet it is the world’s second-deadliest infectious disease (behind COVID-19). For decades, it has killed nearly 1.5 million people a year--95 percent of the global burden falling on developing countries. TB disease mainly impacts the lungs, but it can attack any part of the body, such as the kidneys, spine, and brain—and can be fatal if left untreated. "Clunky diagnostics, a century-old vaccine, and arduous treatments—as well as the rising toll of drug-resistant forms of the disease—all pose major challenges to WHO’s goal of stamping out TB by 2035, especially in the face of COVID-19... The Bacillus Calmette-Guérin vaccine, or BCG, is the only licensed TB vaccine. It’s over 100 years old, and doesn’t do much to prevent TB transmission."
• Why journalists should stop overlooking tuberculosis coverage (Tara Haelle, Why This Matters, AHCJ, Covering Health, 3-26-24) In the first year of the COVID-19 pandemic, TB killed 1.5 million people across the world. It claims more than a million lives annually despite the fact that an (only partially effective) TB vaccine has existed for nearly a century. Tuberculosis is the second deadliest infectious disease in the world, but U.S. reporters often overlook it as it affects relatively few Americans.
• Drug-Resistant TB (Centers for Disease Control & Prevention, or CDC)
• Personal stories of TB (CDC)
• ; we are TB (Tuberculosis Survivors & Advocates) Peer support for current TB patients and TB clinics
• Most People With TB Report No Persistent Cough (Elizabeth Short, MedPage Today, 3-12-24) Over 80% in multinational analysis lacked hallmark symptom.
• The Fault in Our Patents: John Green vs. Johnson & Johnson (part 1) (An Arm and a Leg audio-only podcast, 9-23-23) Bedaquiline, made by Johnson & Johnson, treats drug-resistant tuberculosis, but its price has been a huge obstacle to getting it to places it's needed most--primarily places far away from the U.S.--because of legalistic patent games that pharma companies have mastered. The only reason Johnson Johnson executives think they can get away with this is that they think we aren't paying attention in the part of the world where they sell most of their products, their Band Aids, Tylenol, and Listerine. The beloved writer writer Green and his brother rallied Green's online community around a fight over drug prices. Here's a transcript of that episode (9-7-23)
• How a Big Pharma Company Stalled a Potentially Lifesaving Vaccine in Pursuit of Bigger Profits (Anna Maria Barry-Jester, ProPublica, 10-4-23) A vaccine against tuberculosis, the world’s deadliest infectious disease, has never been closer to reality, with the potential to save millions of lives. But its development slowed after its corporate owner GSK focused on more profitable vaccines.
• Tuberculosis, Like Covid, Spreads by Breathing, Scientists Report (Apoorva Mandavilli, NY Times, 10-19-21) The finding upends conventional wisdom regarding coughing, long thought to be the main route of transmission. (We breath far more often than we cough. And because of their smaller size, aerosols released by tidal breathing can stay afloat in the air for longer and travel further than droplets emitted by a cough.) The finding helps explain why tightly packed indoor spaces, like prisons, often are breeding grounds for TB, as they are for Covid. And the research suggests that some of the methods used to limit coronavirus transmission — masks, open windows or doors, and being outdoors as much as possible — are important in curtailing TB.
• Bacille Calmette-Guérin (BCG) is a vaccine for tuberculosis disease. This vaccine is not widely used in the United States, but it is often given to infants and small children in other countries where TB is common.~ CDC
• Tuberculosis (MedlinePlus, NIH)
• Tuberculosis (overview, Mayo Clinic)
• Tuberculosis (World Health Organization, WHO)

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• These Algorithms Could Bring an End to the World’s Deadliest Killer (Apoorva Mandavilli, NY Times, 11-20-20) In rural India and other places where tuberculosis is rampant, A.I. that scans lung X-rays might eliminate the scourge. Human plus artificial intelligence could do wonders.
• ‘It’s very gratifying’: Pair of studies raise hopes for safer treatment of latent tuberculosis (Helen Branswell, STAT, 8-2-18) Treatment of latent tuberculosis has never been a simple affair. Nine months of a drug known as isoniazid, taken daily, is the standard of care and can help clear the infection. But it also causes liver damage in a fairly significant percentage of cases. Now, researchers say, a pair of studies that were conducted across multiple countries have shown that four months of therapy with another drug, rifampin, is as effective as the standard of care. Furthermore, the shorter course of treatment meant patients were more likely to follow the regimen to the end.
• TB is changing. So is science. (Alison McCook and Eva Kiesler, The Rockefeller Institute, 5-9-19) Tuberculosis keeps reinventing itself. As drug-resistant strains spread across the globe, it’s becoming increasingly harder to wipe out. But researchers, too, are adjusting—and they’re better positioned than ever to attack one of humanity’s most ancient health problems. Outmaneuvering TB will involve designing drugs that act faster. The sheer duration of existing therapy has likely contributed to the drug-resistance problem.
• At Europe's Doorstep, Fierce War Against TB (Gautam Naik, Wall Street Journal, 12-31-12). Part of a series, possibly behind a paywall. "In Western Europe, drug-resistant strains of TB are starting to make a wider appearance. Last year, Britain reported 421 cases of drug-resistant TB, a 26% jump from the previous year. Most Western Europe cases can be traced to the TB-wracked eastern half of the continent. (In contrast, there were 124 case of drug-resistant TB in the U.S. in 2011.)"..."At least 30% of all new TB cases in Eastern Europe are now resistant to key front-line drugs. The equivalent official rate is 6% for China and 2.1% for India, though the latter is probably an underestimate. (In absolute numbers, India and China have far more multidrug-resistant cases because of their larger populations.)"
• Nevada epidemiologist: Deaths of young mother, baby have put tuberculosis back on radar (Associated Press, 10-9-13). Las Vegas: "The winning battle against tuberculosis in the United States may, ironically, be part of the reason why the disease wasn’t detected in a young Las Vegas mother and her baby until it was too late, experts said."
• Where Health Care Won’t Go (Helen Ouyang, Harper's, June 2017) Ouyang describes the TB crisis in the Black Belt, a swath of 17 historically impoverished, predominantly African American counties in rural Alabama and Mississippi. In Marion, Alabama, a single family doctor in his mid-fifties and an overwhelmed county health department lack the resources to contain the spread of the disease. Black families mistrust white health care workers (thanks partly to the Tuskegee study, which allowed untreated syphilis in the black male), there is no local hospital, segregation persists in Alabama schools, and there are few black doctors to recruit to serve the Black Belt's impoverished black population.

Tuberous Sclerosis Association (TSA)

What is Tuberous Sclerosis Complex? TSC is a genetic disorder that cause tumors to form in various organs, primarily the brain, eyes, heart, kidneys, skin and lungs. It’s also the leading genetic cause of both epilepsy and autism.

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Turner Syndrome

• Turner Syndrome Foundation. See Resources, Frequently Asked Questions, and several patient stories.
• The Unspeakable Gift (Katie Steedly, Washingtonian Magazine, 8-6-13) Katie Steedly has Turner syndrome (TS), a rare genetic disorder that affects females who are missing all or part of an X chromosome. Some of the symptoms of TS include short stature, infertility, heart and kidney issues, bone density problems, and hearing loss. Katie participated in a TS study at the NIH Clinical Center to learn more about her condition and its impact on her life. This excellent long-form narrative is her account of undergoing the tests at NIH that would let her and her family know what she might expect--and would also contribute to research on the condition.
• Turner Syndrome (KidsHealth)
• Stories about three patients with Turner syndrome (Children's Hospital of Philadelphia.

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Vitiligo

Vitiligo (pronounced vit-ih-LIE-go) is not an infection and is not a form of skin cancer. It is not contagious; one person cannot catch it from another.
• How I help people understand vitiligo (Lee Thomas, TED talk, TED Salon) Watch the talk, read the transcript. Then read his memoir: Turning White: A Memoir of Change by Lee Thomas. Emmy-winning TV broadcaster Lee Thomas shares the physical and mental battle he's waging with vitiligo -- a skin disorder that's literally turning him white.
• Vitiligo (Mayo Clinic) Symptoms and causes; diagnosis and treatment.
• A No-Nonsense Guide To Vitiligo a book by Yan Valle. TED talk description: "Yan Valle is a vitiligo survivor who investigates the hidden truth about his devastating skin condition. After a harrowing breakup, he finds refuge in the technological underground. He never expected to become CEO of Vitiligo Research Foundation and to make a choice that will change 100 million lives. On this journey to the mysterious source of white spots, Valle relentlessly looks for clues in the body and environment, bringing together shamans, scientists, celebrities and top executives to share valuable secrets and solve the puzzle."
• Bursting myths about Vitiligo: A non-contagious condition (Priya Vernekar, Narayana Health, 8-17-19)
• Vitiligo Support International (VSI)
• Vitiligo (Teen Health) Nemours

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Working with chronic illness (Rosalind Joffe, thoughts on navigating your career)

MEMOIRS OF COPING WITH
CHRONIC, RARE, OR INVISIBLE DISEASES, INCLUDING MENTAL HEALTH PROBLEMS

• Ansay, A. Manette. Limbo: A Memoir (an undiagnosed muscle disorder cuts short her career as a concert pianist)

• Barron, Judy and Sean. There's a Boy in Here (life with autism, from both mother's and son's viewpoint)

• Bauby, Jean-Dominique. The Diving Bell and the Butterfly: A Memoir of Life in Death (immobilized by a stroke, the narrator discovers the life of the unfettered imagination)

• Beasley, Sandra. Don't Kill the Birthday Girl: Tales from an Allergic Life. Beasley's allergies —severe and lifelong—include dairy, egg, soy, beef, shrimp, pine nuts, cucumbers, cantaloupe, honeydew, mango, macadamias, pistachios, cashews, swordfish, and mustard--and that's just the food allergies. A memoir with explanations, for any family dealing with allergies.

• Benton, Elaine. A Silver Lining (Amazon Kindle). Growing up with Gaucher disease (a rare, inherited disorder), and battling Parkinson's, while remaining positive and living life to the full.

• Bernstein,Jane. Loving Rachel (about life with a blind daughter)

• Bissinger, Buzz. Father's Day: A Journey into the Mind and Heart of My Extraordinary Son. A father learns more about his adult son, a twin who, deprived of oxygen for three minutes at birth, is mentally challenged but a savant with a powerful memory.

• Black, Kathryn. In the Shadow of Polio: A Personal and Social History (a memoir of Black's childhood experience of a mother in an iron lung, wrapped in the larger story of the search for a cure)

Bolden, Emma. The Tiger and the Cage: A Memoir of a Body in Crisis "This exquisitely wrought debut memoir recounts a lifelong struggle with chronic pain and endometriosis, while speaking more broadly to anyone who’s been told “it’s all in your head.” The callousness with which Bolden was received by doctors throughout her illness began in early adolescence and spans the rest of her life.

"A memoir written as an investigation, a dive into what it means to be a woman caught in a medical establishment that doesn’t listen to women."~Emme Lund. I was led to this book by Emily Van Duyne's essay-review for Lit Hub, Choosing to Bear Witness: Writing the Story of a Body (11-17-22)

• Bouton, Katherine. Shouting Won't Help: Why I--and 50 Million Other Americans--Can't Hear You (Bouton tells her story about adult onset of profound deafness, and profiles others with similar losses -- an opera singer, a pastry chef, a psychoanalyst, and, as Jerome Groopman writes, "offers a wealth of information and insight about a frustrating and isolating condition."

• Bragg, Bernard. Lessons in Laughter: The Autobiography of a Deaf Actor

• Breslin, Jimmy.I Want to Thank My Brain for Remembering Me

• Brodkey, Harold. This Wild Darkness: The Story of My Death (the story of his confrontation with AIDS)

• Brookes, Tim. Catching My Breath: An Asthmatic Explores His Illness

• Brown, Harriet. Brave Girl Eating: A Family's Struggle with Anorexia (by the author of Feed Me!: Writers Dish About Food, Eating, Weight, and Body Image)

• Brown, Ian. The Boy in the Moon: A Father's Search for His Disabled Son. Memoir of Brown's relationship with his son, Walker, born with a rare genetic disorder that leaves him profoundly developmentally disabled. Not yet for sale in USA; available through Amazon Canada (based on Brown's excellent illustrated series, The Boy in the Moon in Canada’s Globe & Mail).

• Callahan, John.Will the Real John Callahan Please Stand Up?: A Quasi-Memoir. Paralyzed from the neck down after an automobile accident when he was 21, Callahan became "America's most offensive quadriplegic cartoonist," making fun of disability, among other things.

• Casey, Nell, ed. Unholy Ghost: Writers on Depression

• Casey, Nell, ed. An Uncertain Inheritance: Writers on Caring for Family (and some writers on being cared for)

• Cohen, Leah Hager. Train Go Sorry: Inside a Deaf World. The hearing grandchild of deaf immigrants, Cohen (a sign-language interpreter whose father headed the Lexington School for the Deaf in Manhattan) traces the lives of a Russian immigrant (learning a second and third language, English and American sign language or ASL) and a boy raised in an urban ghetto, to explore the world and issues of deafness: debates over ASL, oralism, mainstreaming, cochlear implants (which some contend rob the deaf of their culture). ("Train go sorry" means "you missed the boat.")

• Cohen, Richard M. Blindsided: Lifting a Life Above Illness, a Reluctant Memoir (living with multiple sclerosis and later colon cancer, and how his illness affected his wife, Meredith Vieira, and their three children). Cohen also wrote Strong at the Broken Places (stories about five "citizens of sickness," individuals with ALS, non-Hodgkin's lymphoma, Crohn's disease, muscular dystrophy, and bipolar disorder).

• Costello, Victoria. A Lethal Inheritance: A Mother Uncovers the Science Behind Three Generations of Mental Illness ) (partly about her sons' depression and schizophrenia). See her essay: The Implications of plot lines in narrative and memoir.

• Cousins, Norman. Anatomy of an Illness as Perceived by the Patient (a classic take on how attitude, and especially laughter, affects health outcomes)

• DeBaggio, Thomas. Losing My Mind: An Intimate Look at Life with Alzheimer's (the early memories and the daily struggle of a man coming to terms with a progressively debilitating illness)

• Dendy, Chris A. Zeigler and Alex Zeigler. A Bird's-Eye View of Life with ADD and ADHD: Advice from young survivors (for children and teenagers with the disorder)

• Dubus, Andre. Meditations from a Movable Chair and the earlier collection of essays Broken Vessels (both written after a 1986 highway accident left him largely confined to a wheelchair, and only some essays deal with his response to the accident and his view of life from a wheelchair)

• Edwards, Laurie. Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties

• Ellison, Katherine. Buzz: A Year of Paying Attention , captured partly in her Washington Post article, For ADHD, lots of snake oil, but no miracle cure
• Felstiner, Mary. Out of Joint: A Private and Public Story of Arthritis (life with rheumatoid arthritis as experienced and studied by a feminist and historian).

• Finger, Anne. Past Due: A Story of Disability, Pregnancy, and Birth (a hard-to-put-down memoir that brings to life the politics of pregnancy with a disability, or with fear of bearing a child with a disability-- in Finger's case from a woman whose childhood was made more difficult by surviving both polio and an abusive father). For more about the illness that left her disabled, read her Elegy for a Disease: A Personal and Cultural History of Polio

• Fishman, Steve. A Bomb in the Brain: A Heroic Tale of Science, Surgery, and Survival (about surviving an aneurysm)

• Fox, Michael J. Always Looking Up: The Adventures of an Incurable Optimist. Listen to the audiobook of this book by the actor-turned-philosophical-optimist about what can be taken from you (in his case, with Parkinson's disease, a neurological degenerative disease that takes away easy control of movement) and what cannot.

• Frank, Arthur W . At the Will of the Body: Reflections on Illness (explores what illness can teach us about life, drawing on his experience having a heart attack and cancer)

• Franzen, Jonathan. My Father's Brain (abstract of New Yorker story about his father and Alzheimer's disease, September 10, 2001)

• Fries, Kenny, Body, Remember (a fascinating, beautifully written memoir of creating a life and identity based not only on being "different"--in Fries' case, being gay, Jewish, and very short, because he was born with incompletely formed legs). Contains explicit sex scenes.

• Galli, Richard. Rescuing Jeffrey (an account of the gut-wrenching decisions Jeffrey's parents face in the ten days after an accident leaves him paralyzed from the neck down)

• Gillies, Andrea. Keeper: One House, Three Generations, and a Journey into Alzheimer's (reviewed in the NY Times by Paula Span).

• Gordon, Barbara. I’m Dancing as Fast as I Can (on her addiction to prescription drugs)

• Gordon, Mary. Circling My Mother (Gordon's memoir of her Irish Catholic mother, deformed by polio, eventually suffering dementia — and of their complex mother-daughter relationship)

• Gottlieb, Daniel.Learning from the Heart: Lessons on Living, Loving, and Listening. A family therapist with a radio call-in show, a newspaper columnist made quadriplegic by an accident decades ago, and author of Letters to Sam: A Grandfather's Lessons on Love, Loss, and the Gifts of Life (his autistic grandson -- a special-needs grandfather provides insights for his special-needs grandson)), Gottlieb urges self-acceptance as the road to happiness, not changing themselves or their circumstances.

• Grandin, Temple. Emergence: Labeled Autistic (written with Margaret M. Scariano); Thinking in Pictures (the best-known of her books about growing up with autism); and Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior. Diagnosed autistic as a child, self-described as having Asperger's Syndrome more recently, Temple Grandin has probably done more than any other person to help people understand how it feels to be autistic, what "autism spectrum" means, and what special gifts and limitations autism may bring (in her case, understanding what animals need, which has created a unique professional niche for her, fascinating to read about).

• Grant, Linda. Remind Me Who I Am, Again. About how her mother's vascular dementia (brought on by small strokes) exacerbates Grant's troubled relationship with the woman.

• Grealy, Lucy. Autobiography of a Face (about growing up with Ewing's sarcoma, a cancer that severely disfigured her face)

• Greenberg, Michael. Hurry Down Sunshine (memoir of his daughter's first manic episode, at 15, and how her bipolar disorder affects the family)

• Hadas, Rachel. Strange Relation: A Memoir of Marriage, Dementia, and Poetry. Hadas's memoir of "losing" her husband to frontotemporal dementia.

• Haddon, Mark. The Curious Incident of the Dog in the Night-Time (a work of fiction, not memoir, but it conveys insights from author's work with autistic children)

• Hartlin, Angela. Forever Marked: A Dermatillomania Diary (Lulu.com). See also Pearls: Meditations on recovery from hair pulling and skin picking by Christina Sophia Pearson (CreateSpace).

• Hathaway, Katharine Butler. The Little Locksmith: A Memoir In 1895 a specialist straps five-year-old Katharine, then suffering from spinal tuberculosis, to a board with halters and pulleys in a failed attempt to prevent her being a "hunchback." This memoir charts Katharine's struggle to transcend physical limitations and embrace her life, her body and herself. PW: "Hathaway treats the actual events in her life as practically irrelevant: the story she emphasizes is her spiritual and creative struggle to claim "selfish" time to write, her intense loneliness, her startlingly frank observations about her sexuality and her rebellion against the belief that an imperfect person does not experience desire."

• Havemann, Joe. A Life Shaken:My Encounter with Parkinson's Disease

• Hoblitzelle, Olivia Ames. The Majesty of Your Loving; A Couple's Journey Through Alzheimer's. Practical and spiritual wisdom about facing (together) a disease that changes who a person is or seems to be.

• Hockenberry, John. Moving Violations: War Zones, Wheelchairs, and Declarations of Independence. An NPR journalist left paraplegic after a 1976 car accident writes about living life from a wheelchair--and about cultural differences in how people in various countries treat people with disabilities

• Hoffman,Richard. Half the House (about child abuse)

• Holzemer, Liz. Curveball: When Life Throws You a Brain Tumor (in her case, a baseball-sized meningioma — and remember, a brain tumor is different from brain cancer)

• Hornbacher, Marya. Madness: A Bipolar Life. Hornbacher's memoir of her life with rapid cycling type 1 bipolar disorder, starting as a toddler when she couldn't sleep at night.

• Hornbacher, Marya.Wasted: A Memoir of Anorexia and Bulimia . Written at 23 for young adults, this brutally candid memoir may "trigger" those still in grips or early stages of disease, say some readers, serving as a how-to guide for eating disorders. Good insight for families of those with ED.

• Hull, John. Touching the Rock: An Experience of Blindness (from sight problems at 13, gradually becoming blind)

• Hutchinson, Bryan L. One Boy's Struggle: A Memoir: Surviving Life with Undiagnosed ADD

• Israeloff, Roberta. In Confidence: Four Years of Therapy

• Jamison, Kay Redfield. An Unquiet Mind: A Memoir of Moods and Madness

• Jezer, Marty. Stuttering: A Life Bound Up in Words

• Johnson, Harriet McBryde. Too Late to Die Young: Nearly True Tales from a Life Born with a congenital neuromuscular disease, Johnson wants kids with disabilities to grow up "prepared to survive," not merely waiting to die, so she annually joined protestors against the Jerry Lewis muscular dystrophy telethon. (Read her story Unspeakable Conversations, her 2003 New York Times Magazine article about her conversations with Princeton professor Peter Singer about his beliefs that it might be better to kill some babies that might end up severely disabled, like her.

• Johnson, Marc and Kathleen Gallagher. One in a Billion: The Story of Nic Volker and the Dawn of Genomic Medicine The story of a young boy with a never-before-seen disease, the first human being whose life was saved by genome sequencing-- a bold step into personal genome sequencing—based on the authors’ Pulitzer Prize–winning reporting. Susan Okie's book review (WaPo 4-24-16) suggests both the compelling and complex medical story and (finally) the impact on the family of the mother's single-minded focus on saving the boy's life, including breast reduction surgery so the medical team will take the mother seriously.
• Kaysen,Susanna. Girl, Interrupted (a young girl's experiences with mental illness)

• Kincaid, Jamaica. My Brother (account of her younger brother's death from AIDS)

• Kingsley, Jason, and Mitchell Levitz. Count Us In: Growing Up with Down Syndrome

• Kisor, Henry. What's That Pig Outdoors?: A Memoir of Deafness. Kisor, who lost his hearing at the age of three after a bout of meningitis, lipreads, does not sign, and never entered the subculture of the deaf. He writes of the problems a deaf person has learning to think in language, and with humor describes his life growing up in a hearing world -- the only deaf student at Trinity College, a graduate student at Northwestern, and book review editor for major newspapers.

• Kleege, Georgina. Sight Unseen (marginally sighted and legally blind at 11 from macular degeneration, Kleege explores the meaning and implications of blindness and sightedness, reminding us that only a fraction of blind people see nothing at all)

• Kriegel, Leonard. Flying Solo: Reimagining Manhood, Courage, and Loss. Kriegel came of age in the 1940s and 1950s, when childhood polio left him without the use of his legs. "In this unflinching yet lyrical memoir, Kriegel exalts an American mythic vision of mid-20th-century machismo. . . . Never pulling a punch, the would-have-been Bronx street fighter extols the manly virtues of anger, revenge and rage against the fates."--Publishers Weekly

• Krieger, Susan. Things No Longer There: A Memoir of Losing Sight and Finding Vision. "Even before Krieger began losing her vision to a rare condition known as birdshot retinochoroidopathy, she had become fascinated by the idea that nothing remains as we recall it," wrote a Booklist reviewer.

• Kupfer, Fern. Before and After Zachariah (about a brain-damaged child)

• Kusz, Natalie. Road Song (fascinating memoir about growing up in Alaska, being mauled by a sled-dog, undergoing reconstructive surgery--but also a book about family, particularly a family living an off-the-map life because of a father's driven beliefs)

• Crashing Through: The Extraordinary True Story of the Man Who Dared to See by Robert Kurson (NOT a memoir but it reads like one). The true story of Mike May, a highly successful entrepreneur, athlete, husband, and father who undergoes experimental surgery to regain the vision that he lost in a chemical explosion at age three. Fascinating insights into the nature of vision.

• Kuusisto, Stephen. Eavesdropping: A Memoir of Blindness and Listening (in this sequel to Planet of the Blind, the author learns to live by ear)

• Kuusisto, Stephen. Planet of the Blind (blind in one eye and nearly blind in the other, at his mother's urging he feigns sightedness until coming to terms with his condition)

• Laborit, Emmanuelle. The Cry of the Gull. What it was like to grow up deaf in France, where sign language was banned as too sensual until 1976, well into Laborit's childhood; what it's like to communicate with others if you can't hear them; and how learning sign language made her life easier. (Read this is your child or student is deaf.)

• Lachenmeyer, Nathaniel. The Outsider: A Journey into My Father's Struggle with Madness (in which the author tries to reconstruct his father's downward spiral from a promising career as a sociology professor to his death as a schizophrenic vagrant, eluding police)

• Lang, Jim. Learning Sickness: A Year with Crohn's Disease

• Lear, Martha Weinman. Heart-Sounds: The Story of Love and Loss (heart disease)

• Levy, Andrew. A Brain Wider Than the Sky: A Migraine Diary ("part memoir, part historical inquiry, part philosophical meditation") . See Christine Montross's review in Book World (2009)

• Lewis, Cathleen.Rex: A Mother, Her Autistic Child, and the Music that Transformed Their Lives (the moving story of a mother and her child, a boy who is blind, autistic, and a musical savant)

• Lewis, Mindy. Life Inside (diagnosed as schizophrenic at 15, kept in a psychiatric hospital till 18, recovering for decades, believing she was never schizophrenic)

• Linton, Simi. My Body Politic: A Memoir . Carol Tavris (author of Anger: The Misunderstood Emotion ) wrote of Linton's memoir: "Witty, original, and political without being politically correct, introducing us to a cast of funny, brave, remarkable characters (including the professional dancer with one leg) who have changed the way that 'walkies' understand disability. By the time Linton tells you about the first time she was dancing in her wheelchair, you will feel like dancing, too."

• Mairs, Nancy. Waist-High in the World: A Life Among the Nondisabled (wheelchair-bound from advancing multiple sclerosis, she offers "a Baedeker for a country to which no one travels willingly").

• Manguso, Sarah. The Two Kinds of Decay. A poet's memoir of the rare autoimmune disease called CIDP, which would turn her body against itself, interrupting her life in prolonged illness. "In simple, unsentimental language, she describes her initial symptoms, her sudden attacks, her treatments, her suicidal depression, and her progress as a patient and, incidentally, as a person," wrote a Boston Globe reviewer

• Maurice, Catherine. Let Me Hear Your Voice: A Family's Triumph Over Autism

• McDonnell, Jane Taylor. News from the Border: A Mother's Memoir of Her Autistic Son

• McKee, Steve. My Father’s Heart: A Son’s Journey (a tender memoir about suburban life in York, PA and Buffalo, NY -- in the 1960s, in every sense a “family history,” shedding light on heart disease, especially as inherited in families). Check out Steve McKee’s blog , too.

• McLean, Richard. Recovered, Not Cured: A Journey Through Schizophrenia (a brief, readable memoir by a gay Australian artist whose drawings vividly illustrate the story he tells about his life and mind with schizophrenia)

• Monette, Paul. Borrowed Time, Becoming a Man, and Last Watch of the Night (a gay man battles AIDS)

• Monks, Millicent. Songs of Three Islands: A Story of Mental Illness in an Iconic American Family. A memoir of the Carnegie family, also written about by Lisa Belkin in the Times story, One Family and Its Legacy of Pain (8-11-10)

• Neugeboren, Jay. Imagining Robert: My Brother, Madness, and Survival: A Memoir (his brother's 30-year struggle with mental illness)

• Neugeboren, Jay. Open Heart: A Patient's Story of Life-Saving Medicine and Life-Giving Friendship

• Nixon, Shelley. From Where I Sit: Making My Way with Cerebral Palsy

• Ototake, Hirotada. No One's Perfect . Born with no arms or legs, Ototake participated in school athletics and became an activist for disability rights in Japan, a country that traditionally hid the disabled from public view. An inspiring memoir that became a bestseller in Japan.

• Park, Clara Claiborne. The Siege: A Family's Journey Into the World of an Autistic Child (the First Eight Years of an Autistic Child's Life by the mother)

• Pearson, Christina Sophia. Pearls: Meditations on recovery from hair pulling and skin picking by Christina Sophia Pearson (CreateSpace). Search for more information about hairpulling using the term Tricotillomania.

• Peterson, Alice. Another Alice. Peterson got rheumatoid arthritis at 18, at the start of a promising tennis career

• Pistorius, Martin. Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body. His story is told briefly on All Things Considered: Trapped In His Body For 12 Years, A Man Breaks Free (Lulu Miller, NPR, 1-9-15) What would you do if you were locked in your body, your brain intact but with no way to communicate? How do you survive emotionally when you are invisible to everyone you know and love? That's the first question asked by NPR's new program on human behavior, Invisibilia.

• Phillips, Jane. The Magic Daughter: A Memoir of Living with Multiple Personality Disorder

• Presley, Gary. Seven Wheelchairs: A Life beyond Polio (the story of his journey from the iron lung, in 1942, to life in a wheelchair--working his way through seven of them).

• Raeburn, Paul. Acquainted with the Night: A Parent's Quest to Understand Depression and Bipolar Disorder in His Children

• Rapp, Emily. Poster Child: A Memoir. Born with a shortened leg that later required amputation, Rapp became a poster child for the local March of Dimes--a vivid depiction of what it is like to live with a "grievous flaw," and finally to accept it.

• Rhett, Kathryn, ed. Survival Stories: Memoirs of Crisis

• Richmond, Lewis. Healing Lazarus: A Buddhist’s Journey from Near Death to New Life (viral encephalitis sends him into coma, and in recovery he experiences an acute neuropsychiatric complication from a therapeutic drug)

• Robinson, Jill. Past Forgetting: My Memory Lost and Found ( a compelling account of severe memory loss as the result of a seizure, by a fine novelist who grew up in Hollywood , as daughter of writer and film executive Dore Schary)

• Robison, John Elder. Look Me in the Eye: My Life with Asperger's (an interesting book made more so by the fact that he is the brother of Augusten Burroughs, author of Running with Scissors, and tells from a different angle some of the same stories from their bizarre childhood)

• Roth, Philip. Patrimony (about a father's illness and about the father-son relationship)

• Rothenberg, Laura. Breathing for a Living (making the most of life with cystic fibrosis that takes her life at 22)

• Ricker, Allen. The Best Seat in the House: How I Woke Up One Tuesday and Was Paralyzed for Life. At 51, this TV writer became a victim of transverse myelitis, a rare neurological disorder that left him paralyzed from the waist down. A "potent memoir" and a guidebook for anyone who is disabled, writes Publishers Weekly reviewer.

• Sacks, Oliver. Migraine

• Saks, Elyn. The Center Cannot Hold: My Journey Through Madness (a fascinating memoir of the internal chaos and external unfairness that have made a life with schizophrenia so difficult for this professor of law and psychiatry, and of the talk therapy—indeed, psychoanalysis—she felt was as important as medication in helping her live a high-functioning life as a professor of law and psychiatry)

• Sarton, May. After the Stroke (the poet's journal about recovering from a mild stroke when she is in her seventies)

• Scheff, David. Beautiful Boy: A Father's Journey Through His Son's Addiction (chronicling a precocious teenager's spiral downward from abuse of mind- and mood-altering drugs to meth addiction)

• Scheff, Nic. Tweak: Growing Up on Methamphetamines (the son's story, companion book to Beautiful Boy)

• Schreber, Daniel Paul. Memoirs of My Nervous Illness (memoirs of madness, as recalled a century ago during confinement In a German mental asylum)

• Shawn, Allen. Wish I Could Be There: Notes from a Phobic Life — part memoir, part explanation, a beautifully written and fascinating account of Shawn's own anxiety and agoraphobia, and a fine summary of what is known about how we form and can learn to manage anxiety and phobias.

• Shields, David. The Thing About Life Is That One Day You'll Be Dead (personal history melds with riveting biological info about the body at every stage of life — an "autobiography of the body")

• Shreve, Susan Richards. Warm Springs: Traces of a Childhood at FDR's Polio Haven (an "indelible portrait of the psychic fallout of childhood illness").

• Sidransky, Ruth. In Silence: Growing Up Hearing in a Deaf World

• Sienkiewicz-Mercer, Ruth and Steven B. Kaplan. I Raise My Eyes to Say Yes. (Encephalitis at 5 weeks left Ruth, a healthy baby, paralyzed and unable to speak normally. Diagnosed an imbecile at 5 years, she was eventually institutionalized and severely mistreated at a school for the mentally and physically disabled until a staff turnover brought her help, including a method for communicating.)

• Skloot, Floyd. The Night-Side: Chronic Fatigue Syndrome and the Illness Experience (an account of how a mysterious and life-altering illness struck overnight, dramatically changing Skloot's life, and how he dealt with it); a later memoir, in the Shadow of Memory, contains essays about Skloot's experience of losing his memory after being infected by a virus and struggling to regain lost memories.

• Solomon, Andrew. Noonday Demon: An Atlas of Depression

• Sontag, Rachel. House Rules: A Memoir (how Sontag survived growing up in a dysfunctional family ruled by her controlling doctor father -- her mother advised her to watch what she said as her father was recording her phone calls)

• Spradley, Thomas S. and James P. Deaf Like Me (parents of a child born deaf as the result of an epidemic of German measles waste years avoiding sign language before learning how to communicate with their child)

• Stacey, Patricia. The Boy Who Loved Windows: Opening The Heart And Mind Of A Child Threatened With Autism. PW calls this "a sharply observed, deeply personal account of her son Walker's metamorphosis from a worryingly unresponsive infant to an intelligent, normally functioning child." Stacey spends a huge amount of time following child psychiatrist Stanley Greenspan's "floor time" strategy for Walker: several hours a day of rigorous interactive playtime between parent and child (see The Child With Special Needs).

• Steinem, Gloria. "Ruth's Song, Because She Could Not Sing It," in Outrageous Acts and Everyday Rebellions (about childhood with a mentally ill mother)

• Styron, William. Darkness Visible (about his struggle with crippling depression)

• Sutcliff, Rosemary. Blue Remembered Hills: A Recollection (the memoir of one of Britain’s best-loved historical novelists, crippled and badly disabled from the age of three by Still’s Disease, a form of juvenile arthritis)

• Tammet, Daniel. Born on a Blue Day (memoir of a life with synaesthesia and savant syndrome, a rare form of Asperger's syndrome)

• Taylor, Blake E.S. ADHD & Me: What I Learned from Lighting Fires at the Dinner Table. Memoir and lessons learned by a college freshman, diagnosed with attention deficit hyperactivity disorder (ADHD) when he was five

• Taylor, Jill Bolte. My Stroke of Insight: A Brain Scientist's Personal Journey (a story that provides hope for the brain-injured, not just those who have had a stroke, as this young brain scientist did)

• Wakefield, Darcy. I Remember Running: The Year I Got Everything I Ever Wanted-and ALS. Wakefield discovers she has amyotrophic lateral sclerosis (ALS), the incurable, progressive neuromuscular degeneration known as Lou Gehrig's disease, at age 33, when she also meets Mr. Right. She writes of her losses (walking, speech) and gains (love, a new home, a long-desired pregnancy). Listen to her on NPR, also: ALS Ends Running Days and Life with Lou Gehrig's Disease.
http://www.npr.org/templates/story/story.php?storyId=4854875

• Walker, Lou Ann. A Loss for Words: The Story of Deafness in a Family

• Waxman, Robert and Linda. Losing Jonathan (losing a beloved child to drugs)

• Wexler, Alice. Mapping Fate: A Memoir of Family, Risk, and Genetic Research (on Huntington's Disease)

• Wilensky, Amy S. Passing for Normal (a compelling account of life with a long-delayed diagnosis of Tourette's syndrome and obsessive-compulsive disorder — and an "exploration of the larger themes of difference and the need to belong")

• Willey, Liane Holliday. Pretending to Be Normal: Living with Asperger's Syndrome (a mother's account of her own and her daughter's life with Asperger's syndrome)

• Williams, Donna. Nobody Nowhere (growing up as an autistic child, and a far different story from others listed here)

• Wilson, A.N. Iris Murdoch As I Knew Her. A literary memoir that portrays "Murdoch as novelist & thinker, not Alzheimers poster child," as one reviewer put it, by contrast with the books by Murdoch's husband, John Bayley, especially Elegy for Iris.

• Wurtzel, Elizabeth. Prozac Nation: Young and Depressed in America (atypical depression and bouts with drugs)

• Young, Joan W.. Wish by Spirit: A journey of recovery and healing from an autoimmune blood disease. Joan contended with immune (idiopathic) thrombocytopenic purpura (ITP) but this may be helpful for anyone with a platelet disorder or anyone exploring alternative therapies. Joan's recovery required a total makeover of her lifestyle and daily practices, but I've seen her dancing -- she recovered, looks great, dances beautifully (at Glen Echo, where I got to know her).

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Selected Works

Quick Links

Coping with chronic, rare, and invisible diseases and disorders (and disabilities)

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Skin diseases, new gene therapy for

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