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Illness (resources for specific diseases, conditions, syndromes) including rare diseases (see also special sections under Coping with chronic, rare, and invisible diseases and disorders
• Useful links
• A reading list of books on medicine, health care, and caregiving -- for patients and caregivers • Books for your medical reference shelf 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). 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
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.
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. Heart (cardiac) diseases and conditions, special section under Coping with chronic, rare, and invisible diseases and disorders
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.
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) WE MOVE, 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.
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) |
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 "Happiness is someone to love, something to do, and something to hope for." -Chinese Proverb |
