Illness
(resources for specific diseases, conditions,
syndromes, including rare diseases)

• 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).

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

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
• Diabetes Overview--frequently asked questions (National Diabetes Information Clearinghouse)
• Diabetes Factsheet (World Health Organization)
• Gretchen Becker: Wildly Fluctuating, musings on diabetes news of the week by Gretchen Becker, 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
• Blood Sugar 101: What They Don't Tell You About Diabetes
• Diabetes Update (blog, what they don't tell you about diabetes)
• New Insights Into the Link Between Obesity and Diabetes (Dan Ferber, Healthy Imagination 11-1-11)
• Diabetes (PubMed Health, medical encyclopedia entry -- see "what works" top right, click on "see all")
• American Diabetes Association (many resources)
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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 problems. Nova has useful material online: Map of the Human Heart (images showing bloods flow path through the heart), Troubled Hearts (images), Treating a Sick Heart

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.

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.

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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.

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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)