Medical mysteries, patient stories, and places to read up on illness
• Patient stories
• Caregiver stories
• Useful links
• A reading list of books on medicine, health care, and caregiving -- for patients and caregivers
• Books for your medical reference shelf
Many diseases and conditions are listed (with links) under
Coping with chronic, rare, and invisible diseases and disorders
When you reach a blog about a particular condition, look along the right side of the page and you'll usually find a "blog roll," listing other resources on the same subject. Some will provide more reliable information and insights than others, but patient-written blogs (which may certainly contain misinformation) often provide practical insights into how to live with a disease or condition (psychologically and otherwise).
• Diagnosis (a series of Diagnosis columns by Dr. Lisa Sanders in the New York Times). 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
• 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.
• 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)
• 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 (Boston.com) 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.
• Pulse: Voices from the heart of medicine (personal accounts of illness and healing)
• Cancer Survivor Stories (CancerForward)
• 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
• 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.
• 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)
• Great caregiver stories (Caring.com)
• 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.
ADHD, ADD, and other problems with inconsistent (sometimes hyperfocused) attention (special section under Coping with chronic, rare, and invisible diseases and disorders
ALS (Lou Gehrig's disease, Amyotrophic lateral sclerosis), special section under Coping with chronic, rare, and invisible diseases and disorders
The Caregiver's Legal Guide Planning for a Loved One With Chronic Illness by Christopher J. Berry, CELA. A very helpful guide which you can download for free (PDF of whole book) by visiting this page http://www.theeldercarefirm.com/planning-for-a-loved-one and providing your email address and verifying it by clicking a verification link sent to your inbox.
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)
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.
HealthNewsReview.org (rates news stories about medical treatments, tests, products and procedures for accuracy, balance and completeness; doesn't rate all stories, but search on keyword to see which stories on that topic they rate good or bad)
Heart (cardiac) diseases and conditions, special section under Coping with chronic, rare, and invisible diseases and disorders
Index of organizations in NORD's database of more than 2,000 patient organizations and other sources of help for patients with rare diseases
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.
Medline Plus (reliable definitions, explanations, and links to resources, from NIH and the U.S. National Library of Medicine)
Medical Mysteries (an interesting series on misdiagnosed, undiagnosed, and other mystery illnesses, in the Health Section of the Washington Post)
Mistaken attachments, Alzheimer's, and the O'Connor family's decision to bring the subject out of hiding
Mothering Mother -- video interview with Carole O'Dell, author of Mothering Mother (Melissa Long, CNN)
Movies and videos dealing with illness, death, dying, and healing (comments about them, on the Literature, Arts, and Medicine Database), click on the titles
National Guideline Clearinghouse (syntheses of guidelines for professionals, on screening and treatment for various diseases)
National Guideline Clearinghouse index (of guidelines available on NGC site, alphabetical by organization)
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 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.
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.
Prepared Patient Forum (Center for Advancing Health site on how to find and use safe, decent health care)
Rare Diseases (transcript of discuss about RareShare.org and the importance of giving people with rare diseases the ability to connect with each other around the world), led by AU professor Arturo Porzecanski and David Isserman, cofounder of RareShare.org
Rareshare (social hub building communities for patients, families, and healthcare professionals affected by rare disorders)
Sharing the Pain: Rare Disease Puts an AU Economist in Touch with Fellow Patients Around the World (Sindya N. Bhanoo, Washington Post, 2-10-09)
Shingles: Prevention of Herpes Zoster (comprehensive report on shingles, for professionals, from Morbidity and Mortality Weekly Report, 5-15-08)
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)
Videocasts of past NIH lectures (both professional and Medicine for the Public), for those researching their topics deeply
A READING LIST OF BOOKS ON MEDICINE, HEALTH CARE, AND CAREGIVING -- FOR PATIENTS AND CAREGIVERS
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.
FOR YOUR MEDICAL REFERENCE SHELF
Although you can learn a lot online through Medline Plus and WebHealth.com (links above), you may want to have a good general reference book at home, too. Here are a few possibilities:
The Body Clock Guide to Better Health by Michael Smolensky and Lynne Lamberg
The Cornell Illustrated Medical Encyclopedia: The Definitive Medical Home Reference Guide (Weill Cornell Health Series) by Antonio Gotto
The Johns Hopkins Complete Home Guide to Symptoms & Remedies by Editors of The Johns Hopkins Medical Letter Health After 50
The Johns Hopkins Consumer Guide to Medical Tests: What You Can Expect, How You Should Prepare, What Your Results Mean by Simeon Margolis
Know Your Body: The Atlas of Anatomy by Emmet B. Keefe
Mayo Clinic Family Health Book, 3rd edition, by the Mayo Clinic
Mosby's Manual of Diagnostic and Laboratory Tests by Kathleen Pagana and Timothy Pagana (helpful in interpreting lab test results)
• 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.
Health News Blogs (excellent links, Association of Health Care Journalists)
Think Like a Doctor (medical mysteries thread, Well blog, New York Times). Readers are given enough symptoms to be able to diagnose each medical mystery featured. A surprising number of readers deliver the right diagnosis.
Google "Medical Mysteries," Health section, and "Washington Post" and you'll find another off-and-on series inviting you to identify a medical problem. For example, see Medical Mysteries: Cerebral palsy proves not to be the cause of boy’s decline (Sandra G. Boodman, Health & Science, Washington Post, 12-17-12)
"I know why Tony Snow, George W's press secretary, called his bout with colon cancer, 'the best thing that ever happened to me.' And why my friend, Gilda Radner said about cancer, 'If it wasn't for the downside, everyone would want it.'
"The best side-effect of fighting a life-threatening disease is learning how to live.
"When you're made frighteningly aware of how little time you may have left, learn what is important: family, friends and helping others."
--Joel Siegel, after ten years of fighting colon cancer
Commentary about poems dealing with illness, death, dying, and healing (Literature, Arts, and Medicine Database)
"Happiness is someone to love, something to do, and something to hope for."