Medical mysteries and patient stories

Medical mysteries
(illnesses and conditions that are difficult to diagnose)
Patient stories
Medical professionals' stories
Caregiver stories

Medical mysteries (stories about
difficult-to-diagnose illnesses or conditions)

5 medical conditions to treat immediately (Consumer Reports, 6-29-14) Get help fast for a stroke (treatment window: 3 hours), puncture wound (or deep cut, animal bite--treatment window: 72 hours), the flu (48 hours), Bell's palsy ( a sudden facial paralysis caused by inflammation of a facial nerve==treatment window: 72 hours), sudden deafness (treatment window: 72 hours). Read the article!
Diagnosis (a series of Diagnosis columns by Dr. Lisa Sanders in the New York Times magazine). Often called Think Like a Doctor . Dr. Sanders challenges readers to solve a tough medical mystery. Her book: Every Patient Tells a Story: Medical Mysteries and the Art of Diagnosis. A few of the Diagnosis columns:
---Was This a Virus, or Something More Dangerous for Her — and Her Fetus? (Sanders, Diagnosis, 11-16-17) She thought a hot bath might make her feel better, but instead she felt as iif her already-meager energy had dissolved in the warm water... She was taking acetaminophen — her obstetrician said that it was safe for her baby. ... er mother, seeing her 18-year-old daughter on the bed, not responding, was suddenly afraid. This wasn’t just a cold.
---He Thought He Had Caught His Co-Worker’s Stomach Bug. Why Were His Symptoms So Different? (Sanders, Diagnosis, 8-3-17) For the past two years, he’d been taking a medication called etanercept for Sjogren’s syndrome, an autoimmune disorder that wreaks havoc on the glands that make tears and saliva, as well as on some of the joints. If it was a bacterial infection, they had to be careful to tailor antibiotics. He looked healthy, but the medical team read up on possibilities while testing various possibilities.
---It Began with Sudden Blackouts. Then Came Some Alarming News. (Sanders, Diagnosis, NYT, 8-7-17) And part of the diagnosis was done from afar.
---How a Joke About Flying Squirrels Led to an Ailing Woman’s Cure (Sanders, Diagnosis, NYT, 6-22-17)
---She Had Never Suffered From Anxiety. Was She Having Her First Panic Attack? (6-7-17)
---Why Were This Man’s Muscles Weak and His Body Covered With Pink Dots? (5-17-17)
---What Caused This College Student’s Stomach Pain and Vomiting? (4-27-17)
---He Was on Blood Thinners and Supplements. Could He Still Have Had a Stroke? (5-11-17)
---Why Did This Man Lose His Memory, Words and Even His Ability to Walk? (4-13-17)
---Why Did This Woman Collapse With a Rash After Her Eggs Were Harvested? (3-16-17)
---Why Did Her High Blood Pressure Turn Dangerously Low? (1-12-17)

Medical Mysteries. Sandra G. Boodman (Washington Post) writes about challenging medical cases--ones that have been resolved but in which the patient's symptoms were puzzling to doctors or suggested an immediate diagnosis that would have been wrong.
The sores in her mouth were a symptom of something very serious (Sandra G. Boodman, WaPo, 4-7-17)
A dog bite sent him to the ER. A cascade of missteps left David, an industrial engineer, battling a catastrophic illness that kills between 60 and 80 percent of its victims. (Sandra G. Boodman, WaPo, 6-16-17) David didn’t have a regular doctor and had never gotten around to getting recommended immunizations. David’s case highlights the need of “having front-line providers be aware of these rare infections.”
She thought she’d pulled hip muscles, but six doctors couldn’t diagnose her pain (Sandra G. Boodman, WaPo, 5-15-17) Read this, if you ever danced a lot.

Why Did This Man Lose His Memory, Words and Even His Ability to Walk? (Lisa Sanders, Diagnosis, NY Times, 4-13-17) A year ago, he was fine, explained the patient’s sister. He was married, working as an auto mechanic, happy, normal. Then, six or seven months ago, he became forgetful. Little things at first — he couldn’t think of the right word, remember people’s names. The decline was too precipitous to be Alzheimer's. The patient could not make his eyes move up. When he tried to walk, his feet remained on the ground — as if there were a magnet holding them down..."The patient had already had two spinal taps as part of his work-up, and though there was some evidence of an infection, there was no sign of the most common viruses (like herpes or H.I.V.) or bacteria (like Lyme or syphilis). Nor was there any evidence of multiple sclerosis or other types of inflammatory diseases."
Why Did This Woman Collapse With a Rash After Her Eggs Were Harvested? (Lisa Sanders, Diagnosis, NY Times, 3-16-17) Testing the medications she'd taken helped solve the mystery.
Why Did Her High Blood Pressure Turn Dangerously Low? (Lisa Sanders, Diagnosis, NY Times, 1-12-17)
Why Was This 3-Year-Old So Irritable, and What Was Wrong With Her Eye? (Lisa Sanders, Diagnosis, NY Times, 2-16-17) She’d been angry and irritable, screaming and kicking at her mother over nothing. There were a couple of tiny pimples along the lower lid, near the lashes, and a couple more just next to the eye. The mother had had a cold sore on her lip earlier that month. Then the child became extremely sensitive to light. Her aunt, Amber Bard, a third-year medical student, turned to visualDx, diagnostic-support software that helps doctors make a diagnosis (in this case, mostly on skin findings) and came up with a diagnosis that the child's doctor tested for, and she was right.
A persistent headache turned out to be something ominous (Sandra G. Boodman, WaPo, 11-18-16) A thrumming headache that persisted, and turned out not to be migraine, required diagnosis by a specialist. “The ability of doctors to recognize the disorder — or to send them to a specialist who might — is crucial, Katz noted, but the disease remains unrecognized or misdiagnosed. 'If you see a really bad case of optic neuritis,' Katz said, 'especially in a minority patient, it’s important to do an NMO test. Now, if you can diagnose it, you can save their vision, save their spinal cord and save their lives.'"
A man’s persistent headache proves hard to diagnose and harder to treat (Sandra G. Boodman, WaPo, 3-19-12)
Five simple steps to avoid becoming a medical mystery (Sandra G. Boodman, WaPo, 12-2-16) "While diagnosis might seem straightforward, the process can be surprisingly complex, strewn with cognitive land mines, logistical roadblocks and red herrings. These complexities — and wrong turns — helped create the medical mysteries I’ve profiled in a monthly column for the past decade. Their examples highlight some of the steps readers can take to avoid becoming a mystery."
Medical Mystery: Why was toddler left paralyzed by routine injection? ((Mark E. Bruley,, Philadelphia Enquirer, 9-15-17) And why toddlers and small children should not be given injections in the buttock. Bruley is a biomedical engineer and VP for accident and forensic investigation at ECRI Institute in Plymouth.
Medical Mystery: An unexpected outcome from liposuction (Mark E. Bruley,, Philadelphia Enquirer, 6-23-17) When does technology help and when does it become part of the problem?
Medical Mystery: What made the night-shift nurses so sick? (Mark E. Bruley, Philadelphia Inquirer, 3-5-17)
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.
Odd teeth: A mother’s Internet sleuthing led to her daughter’s troubling diagnosis (Sandra G. Boodman, WaPo, 2-8-16) One of the themes in this and other of these medical mystery stories is that when the first doctor wasn't answering her questions, she went to another doctor, who listened to her and sought the right kind of help.
A simple test proved that a teen with stomach pain wasn’t a hypochondriac after all(Sandra G. Boodman, WaPo, 12-21-15) She'd had stomach pains all her life, but in college things got worse. Advice from a friend and a simple lab test led to a diagnosis and a way to eliminate the source of the pain.
He beat leukemia. But then, mysteriously, things got really bad. (Sandra G. Boodman, WaPo, 6-6-16)
For half her life, doctors told her to lose weight. But something else was going on. (Sandra Boodman, WaPo, 5-16-16)
Doctors were startled to find the cause of this 24-year-old’s excruciating pain (Sandra G. Boodman, WaPo, 4-11-16) Johanna Dickson thought her excruciating stomach pains were caused by food poisoning at first. It soon became clear the issue was more serious, but Dickson's eventual diagnosis shocked both her and her doctors.
Doctors thought he just had jock itch. Then it spread. (Sandra G. Boodman, WaPo, 10-24-16) "The experience would provide a crash course in the importance of finding experts who could provide appropriate treatment, in the necessity of learning as much as possible about a disease, and in the loneliness of coping with a diagnosis so rare it lacks a support group."
He couldn’t eat, drink or work. And doctors couldn’t explain his searing pain. (Sandra G. Boodman, WaPo, 3-14-16)
What was making her son so sick? A doctor is frustrated by the diagnostic process. (Sandra G. Boodman, Medical Mysteries, Wash Post 3-17-14) After Zachary Fox contracted the flu, his disabling stomach problems began, then grew worse.
Woman’s nonstop drenching sweats were a medical mystery (Sandra G. Boodman, Medical Mysteries, Wash Post, 10-14-13) Oddly, her palms, underarms and the soles of her feet remained dry.
Emergency surgery followed many missed chances to diagnose illness (Sandra G. Boodman, Medical Mysteries, Wash Post, 8-12-13)
What was wrong with the professor’s voice? (Sandra G. Boodman, Medical Mysteries, Wash Post, 2-23-15) The problem began with a lump in her throat. On vacation , Cutter awoke one morning feeling that something was stuck in her throat. After several weeks, her voice became increasingly raspy.
Like a slow-motion stroke (Sandra G. Boodman, Medical Mysteries, Wash Post, 4-20-15)
A Bad Diagnosis (Sandra G. Boodman, Medical Mysteries, Wash Post, 8-24-15) A prominent Baltimore neurologist explained that his angry outbursts, terrifying hallucinations and faltering balance were the result of Lewy body dementia, a relentlessly progressive, largely untreatable and ultimately fatal illness that resembles both Parkinson’s disease and Alzheimer’s. But the neurologist was wrong. To Jan De Beur, Dan’s experience underscores the potential pitfalls of a clinical diagnosis made largely on the basis of symptoms, not a concrete test that confirms or refutes a diagnosis.
Medical Mysteries: Doctors puzzled by woman’s dizziness and amplified body sounds (Sandra G. Boodman, Medical Mysteries, Wash Post, 11-24-14)
More Medical Mysteries (a page linking to many of Sandra Boodman's fascinating pieces for the Washington Post)
Think Like a Doctor (the excellent New York Times series--where you're asked to solve the problem and are given the answer later)
Think Like a Doctor: Ordering the Right Test (Lisa Sanders, NY Times 10-26-11)

Boston Medical Mysteries ( Solve diagnostic puzzles with Dr. Sushrut Jangi

7 Diseases Doctors Miss (Alexis Jetter, Prevention, 2-3-15)
15 Diseases Doctors Often Get Wrong (Amanda MacMillan, Health) When mystery ailments strike: Celiac disease, fibromyalgia, and other ailments that are difficult to diagnose.
Top 10 Mysterious Diseases (LiveScience, 5-30-06)
The Mystery Diseases You Need To Watch Out For (Corrie Pikul, HuffPost, 6-18-14) It's not "nothing," it's not a cold, and you've ruled out stress, exhaustion and a crappy diet. Here are some other possibilities to consider.
Fighting a Mystery Disease (Michelle Bloomquish, WebMD Medical News, 1-1-14, on Melissa Kaplan's Chronic Neuroimmune Diseases) Many autoimmune ailments like lupus, scleroderma, and rheumatoid arthritis are often misunderstood and misdiagnosed. Where does that leave suffering women?
For Those With Mystery Illnesses, a 'Clinic of Last Resort' (Alan Mozes, HealthDay News, 10-26-11) "Researchers at the NIH's Undiagnosed Diseases Program (UDP) in Bethesda, Md., say that since the program's inception two years back, they've made considerable headway in unraveling complex medical riddles....'We're talking about patients who have gone a long, long time without any diagnosis,' noted UDP director Dr. William A. Gahl, who is also clinical director of the National Human Genome Research Institute (NHGRI). 'These are patients who have already been seen at one of the country's major health facilities — sometimes all of them — but have had no success.'"
Undiagnosed Diseases Program (National Center for Advancing Translational Sciences, NIH)
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.
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Patient stories

Pulse: Voices from the heart of medicine (personal accounts of illness and healing)
Cancer Survivor Stories (CancerForward)
Uncertain future of anti-pollution laws could invite rise in mercury-poisoned seafood (Kathy Jean Schultz, Center for Health Journalism, USC Annenberg, 11-4-16) A misdiagnoses and a wrong test led to years of crippling pain and loss of the ability to work for a woman in Hawaii. Finally, a new doctor tested Nancy Seagal for mercury-poisoning, which was at the root of her long-term illness. Possible source: fish containing mercury. Treatment: chelation therapy (two years worth). The loosening of anti-pollution regulations could make this kind of environmental illness more common.
What It's Like to Be Struck by Lightning (Charlotte Huff Mosaic, Science Alerts, 6-3-17). "Lightning is responsible for more than 4,000 deaths worldwide annually – according to those documented in reports from 26 countries.... Of every ten people hit by lightning, nine will survive to tell the tale. But they could suffer a variety of short- and long-term effects. The list is lengthy and daunting: cardiac arrest, confusion, seizures, dizziness, muscle aches, deafness, headaches, memory deficits, distractibility, personality changes and chronic pain, among others." Members of Lightning Strike & Electric Shock Survivors International meet every spring to talk about the experience.
Experts by Experience 2015 (a compilation of patients' stories, third in a series, in cooperation with Stanford Medicine). See also the compilation for 2014 and An encephalitis journey: A dozen doctors and 2.5 years
A Sense Of Self: What Happens When Your Brain Says You Don't Exist (Terry Gross interviews science journalist Anil Ananthaswamy, Fresh Air, NPR, 7-28-15). Ananthaswamy, author of : The Man Who Was Not There: Tales from the Edge of the Self, thinks a lot about "self" — not necessarily himself, but the role the brain plays in our notions of self and existence. He "examines the ways people think of themselves and how those perceptions can be distorted by brain conditions, such as Alzheimer's disease, Cotard's syndrome and body integrity identity disorder, or BIID, a psychological condition in which a patient perceives that a body part is not his own."..."
From a coma to the Olympics: Chase Kalisz’s road to Rio (Barry Svrluga, WaPo, 7-18-16) At age 8, Kalisz was diagnosed with something called Guillain-Barré syndrome, an autoimmune disorder that strikes 3,000 to 6,000 people in the United States each year. Eighty percent fully recover. In rehab he discovered the swimming pool...
How One Man’s Face Became Another Man’s Face (Steve Fishman, New York Magazine, 11-15-15) The story of a human transplant, on a man whose face had been shot off. It was the first surgery to replace, in addition to the face, the jaws, teeth, and tongue. With pre-surgery photo and post-surgery video of Patrick Hardison.
The Anosognosic’s Dilemma: Something’s Wrong but You’ll Never Know What It Is (Part 1) (Errol Morris, Opinionator, NY Times, 6-20-10) Anosognosia is a neurological disorder in which a person who suffers from a disability seems unaware of or denies the existence of his or her disability. An anosognosic patient who is paralyzed simply does not know that he is paralyzed.
Patient Stories UK (using digital and broadcast media approaches to provoke debate about safety and patient experience in healthcare)
Back in the Game (world's largest forum of orthopedic and rheumatological patient stories)
Medical Mysteries (Sandra G. Boodman, Washington Post, series) Medical cases that have been resolved but in which the patient's symptoms were puzzling to doctors or suggested an immediate diagnosis that would have been wrong)
Patients' Stories (Narrative Matters, listen on iTunes)
Mystery Diagnosis (Discovery Health, videos, including A case of Paralysis
An Uncertain Inheritance: Writers on Caring for Family, edited by Nell Casey
The Boy in the Plastic Bubble and other tales of NIH research (Pat McNees, for NIH)
Decompression Illness (the Bends), story by Philip Greenspun
Fighting a Rare Illness--Together (Meg Massey, Parade 2-13-09). Story of the McCurdys and the Barth Syndrome Foundation.
Continuing Education (H. Lee Kagan, Pulse, 7-27-14). A physician learns the hard way--as a flu patient--the dangers of not staying hydrated and the discomforts of the nasogastric (NG) tube.
In Sickness and in Health (Dick Gordon, The Story, American Public Media, 1-24-07) Sam's wife Beatrice died of breast cancer in 2001, and despite his professional connections, his experience almost broke him financially.
MRSA: The bug drugs can't cure (Maryn McKenna, Self, story about methicillin-resistant Staphylococcus aureus)
Personal stories of schizophrenia (WFSAD)
Memoirs of illness, crisis, disability, differentness, and survival (a reading list)
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Caregiver stories

Great caregiver stories (
Caregiver stories (Caregiving Alliance)
Caregiver and family member stories (Alzheimer's Association)
Patient and caregiver stories (M.D. Anderson Cancer Center)
Things I Wish I'd Known (Cancer Caregivers speak out)
Patient, Caregiver, and Staff stories (Moores Cancer Center, UCSan Diego)
Search Google using the appropriate terms "patient" "caregiver" "stories' and the terms for the condition you want to know about ("cancer" "dementia" and so on) and you will no doubt turn up LOTS of stories. Some of them will be scary, some will be helpful -- and some encouraging.
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Medical professionals' stories

Pulse (Voices from the heart of medicine). Personal accounts of illness and healing, fostering more humanistic medicine, encouraging health care advocacy)
Crash Course (Marilyn Barton, Pulse, 10-7-16) A nursing student in the psych ward learns the anxiety of not knowing what to do.
Family Summons (Amy Cowan, Pulse, 1-6-17) The benefits of summoning the family when a person may be dying: Getting the human take on the person.
With doctors losing respect, perhaps it’s time to expose medicine’s dark side (Ahmad Yousaf, Kevin MD, 5-22-16) Health care professionals deal with patients every day who offer verbal abuse and physical threats, but the doctors must keep treating them.
Bad Medicine (the dubious, bad and sometimes frankly lunatic developments in the medical world). Ben Goldacre's column from The Guardian, covering media misrepresentations of science, with a particular focus on medicine--with a forum. Listen to his TED talk, Battling Bad Science.
Best 50 Medical Technology Blogs (Forensic Science)
The Chart (Dr. Sanjay Gupta, CNN)
Correcting the AIDS Lies (AIDS dissent is largely based on misinformation and misunderstanding--collating all relevant facts so that no one need die of ignorance)
The Doctor Blog (ZocDoc)
Engaging the Patient
HealthNewsReview (excellent watchdog blog, offering perspective and opinion, by Gary Schwitzer and others). See also's Story Reviews (systematic, criteria-driven critiques of news stories and other media messages that may affect the public dialogue about health care).
Grand Rounds, a weekly summary of the best health blog posts on the Internet, available at Better Health and at
Health Care Renewal Addressing threats to health care's core values, especially those stemming from concentration and abuse of power. Advocating for accountability, integrity, transparency, honesty and ethics in leadership and governance of health care.
Health News Watchdog
KevinMD (physicians' voices)
MD Whistleblower
Med Student's t-Test (a medical/​graduate student's musings on medicine and science, with occasional rants about quackery)
Science-Based Medicine (blog exploring issues and controversies in science and medicine, including dubious medical, nutritional, and related approaches to medical diagnosis, treatment, etc.). See excellent page of links to medical blogs, medical sites, recommended sites, and skeptical and science blogs
Science-based pharmacy (turning an eye on the profession, separating fact from fiction on both sides of the counter)
Shrink Talk
Shrink Rap (for psychiatrists by psychiatrists) and now a book: Shrink Rap: Three Psychiatrists Explain Their Work by Dinah Miller, Annette Hanson, and Steven Roy Daviss. Listen to them interviewed on Talk of the Nation (NPR)
Skeptical Scalpel
Speaking of Medicine (PLOS Medical Journals' community blog)
STAT Reporting from the frontiers of health and medicine
This May Hurt a Bit (Shara Yurkiewicz, Scientific American, The intuitions, insights, and growing pains of a medical student)
Top 50 Public Health Blogs (The Science of Health blog, 1-13-10)

The Vaccine Times
Vital Signs ( blog in defense of science-based health care)
White Coat Underground (doctoring in real life)
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Useful Links

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."

Diabetes (a whole section on diabetes on the page about Coping with chronic, rare, and invisible diseases and disorders

Family Health History Resources (Genetic Alliance's helpful links to resources)

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.

Get Palliative Care (care to comfort, not to cure)

Grand Rounds (online) (Dartmouth-Hitchcock Medical Center, talks and slide shows on many topics)

Handbook for Mortals: Guidance for People Facing Serious Illness by Joanne Lynn, Janice Lynch Schuster, and Joan Harrold ("sensitive and practical advice for the ambiguous final stage of a life-threatening illness--when hope for a recovery is waning and the patient and family members are turning toward a different horizon, that of accepting and supporting an imminent death. For the most part, the authors focus on physical concerns such as pain management, artificial feeding, and an especially poignant passage about assisted suicide.")

Health Boards (150 message boards on various diseases, conditions, and health topics)

Health care guidelines store (Institute for Clinical Systems Improvement --ICSI guidelines, Tier 1 and Tier 2)

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.

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.

Medicine and the Media.The Dartmouth Institute, in partnership with the National Institutes for Health and the Department of Veterans Affairs, teaches journalists to approach medicine as skeptically as they do politics by teaching them how to interpret and present scientific information. (This course was previously offered at NIH, and the venue keeps changing. The PDFs offered onsite may be helpful.
---TDI Numbers Glossary
---TDI Questions to Guide Reporting
---The Evidence-to-Practice Gap: Teaching Clinicians Evidence-based Medicine (two-hour video of NIH seminar, Medicine Mine the Gap series, Dr. Scott Richardson, 5-27-12) See other videos in the Medicine: Mind the Gap series, part of the NIH Webinar Series, which is part of the larger NIH Videocasting and Podcasting series (Center for Information Technology, NIH)


National Cancer Institute (NCI, 1-800-4-CANCER, OR 1-800-422-6237)
National Guideline Clearinghouse AHRQ's National Guideline Clearinghouse is a public resource for summaries of evidence-based clinical practice guidelines. See Matrix for accessing guideline summaries bases on two sets of criteria you input.
National Meningitis Association (NMA)
Neuromuscular Diseases (MDA list includes muscular dystrophies, motor neuron diseases, metabolic diseases of muscle, diseases of peripheral nerve, inflammatory myopathies, diseases of the neuromuscular junction, myopathies due to endocrine abnormalities, and other myopathies.
• NIH Office of Rare Diseases Research (ORDR). Now, see Genetic and Rare Disease Information Center (GARD) a program of the National Center for Advancing Translational Sciences (NCATS), funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.
NIH Research. CRISP replaced by NIH RePORTer (NIH Research Portfolio Online Reporting), a searchable database on federally funded biomedical research projects and programs. News updates here.
Orphanet (portal for rare diseases and orphan drugs--invaluable resources) "Rare diseases are rare, but rare disease patients are numerous"
Platelet Disorder Support Association, PDSA, for those with with immune (idiopathic) thrombocytopenic purpura or other platelet disorders, a website created by Joan Young, author of Wish by Spirit: A journey of recovery and healing from an autoimmune blood disease.

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, ose and throat (24), Eyes and vision (32), Fitness and exercise (8) Gay and lebian 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."
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)

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An Uncertain Inheritance: Writers on Caring for Family edited by Nell Casey. Wonderful writing, excellent insights into the complexities both of caring and of being cared for, during an illness.

An Unquiet Mind by Kay Redfield Jamison (about manic depression).

Better: A Surgeon's Notes on Performance by Atul Gawande

Complications: A Surgeon’s Notes on an Imperfect Science by Atul Gawande

How Doctors Think by Jerome Groopman

How We Die by Sherwin Nuland (excellent descriptions of exactly how the various body systems fail, when they fail -- a primer even for healthy readers)

Illness as Metaphor: AIDS and Its Metaphors by Susan Sontag

In the Country of Hearts: Journeys in the Art of Medicine by John Stone

Just Here Trying to Save a Few Lives: Tales of Life and Death in the ER by Pamela Grim

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

The Man Who Mistook His Wife for a Hat and Other Clinical Tales, by Oliver Sachs

The Measure of Our Days: New Beginnings at Life's End by Jerome Groopman

Medical Detectives, by Berton Roueche

Second Opinions: Stories of Intuition and Choice in the Changing World of Medicine by Jerome Groopman

Unholy Ghost: Writers on Depression, ed. Nell Casey

You: The Smart Patient, An Insider's Handbook for Getting the Best Treatment, by Drs. Michael F. Roizen and Mehmet C. Oz, with the Joint Commission (one of a series by the charismatic Oprah favorite, Dr. Oz, and the knowledgeable Dr. Roizen)

The Thing About Life Is That One Day You'll Be Dead , David Shields' excellent autobiography of his body, is a fascinating little book about life and death and about what's happening to your body enroute from one to the other. Don't read it if you don't want to hear the bad news, but it does help explain things like why you have to make more trips to the bathroom as you age.