Christine Gray’s comments on the New York Times open thread merit a separate post (updated on 10/7/2008): Five years ago, when many pediatric hospitals were unaware of or unwilling to acknowledge the capacities of online medical support groups, my thirteen-year-old daughter was diagnosed with a subset of a rare cancer (sarcoma or soft tissue cancer). […]
e-patient stories
E-patients with Agency (or Attitude?)–Susannah Fox
What are the social and psychological factors that affect how someone is treated — or even their health outcomes? This question has popped up in my reading and in my work quite a bit this week, so I wanted to share what I have learned from three leading thinkers: Peggy Orenstein, Dr. Jeffrey Lin, and […]
E-patient Interview: Keith Schorsch–Susannah Fox
When Keith Schorsch began suffering from facial paralysis, fatigue, and severe muscular and skeletal pain, eleven doctors failed to identify the cause. Luckily, a friend recognized the symptoms as similar to what she had suffered when she had Lyme disease – and that’s the clue that saved Keith. Keith turned his experience into a consumer […]
Consumers talk back to CNN’s Empowered Patient–Susannah Fox
For several informative empowered patient stories, see the Comments at bottom of this post. CNN’s Empowered Patient column, by medical correspondent Elizabeth Cohen, contains good, if not groundbreaking, advice, plus the occasional exaggeration or misconception. For example, here on e-patients.net, Charlie Smith praised the Empowered Patient column on misdiagnosis; Gilles Frydman dismantled the tips on […]
E-patient Interview: Sheryl Stein
Sheryl Stein, known to many as “wrekehavoc,” dispenses her wisdom and humor on a 6,000-member online community of parents (using good old listserve technology) and on her blog. In this third edition of our e-patient interviews, Sheryl talks about the power of community and how “reaching out via the internet is now an ingrained habit […]
E-patient Interview: Amy Tenderich–Susannah Fox
Amy Tenderich is the engine behind DiabetesMine, “a gold mine of straight talk and encouragement for people living with diabetes.” Hearing her speak at Health 2.0 was a highlight of the conference for me and she just co-authored a book, so I wanted to bring her over to our page and ask a few questions […]
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