Archive for the ‘others' e-patient stories’ Category

An e-Patient is Born: Elyse Chapman’s story

April 26, 2009 · Filed Under e-patient stories, net-friendly docs, others' e-patient stories, trends & principles · 21 Comments

One of the key learnings of my first year as a student of the e-patient movement, studying how healthcare is evolving, is this: People get radicalized when it gets personal.

This is one such story: it’s the e-patient awakening of a long-time personal friend of mine. Facing a painful medical crisis, she asked questions and carried out research that revealed options no one had told her about. By becoming an e-patient, she’s changed her future.

And what fascinates me, as we plan the new world of participatory medicine, is this: How does this awakening happen? What are the pivotal moments?

Patient Power: Andrew Schorr

October 6, 2008 · Filed Under e-patient stories, others' e-patient stories · 6 Comments

Andrew Schorr’s recent comment also merits a separate post:

I am a 12-year leukemia survivor and very grateful to the ACOR community members who helped me numerous times along the way.

I have dedicated my life to creating community online and also, in a supplementary way, on radio. But my concept of community is a bit different. I believe it should not be seen as patients doing their own thing because doctors didn’t either listen to them or give them enough time – or lacked knowledge. I believe patients, caregivers AND specialists/researchers can easily be in ONE community together toward a common goal of better health for current patients AND future ones.

E-patient Interview: Keith Schorsch

June 6, 2008 · Filed Under e-patient stories, others' e-patient stories · 7 Comments

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 call to action (and a business plan) by founding Trusera.com. Here is his e-patient story…

E-patient Interview: Sheryl Stein

May 1, 2008 · Filed Under e-patient stories, others' e-patient stories · 5 Comments

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 in our world.” Jump in here…

E-patient Interview: Amy Tenderich

April 18, 2008 · Filed Under e-patient stories, others' e-patient stories · 4 Comments

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 about how she came to be such a kick-ass e-patient.

E-patient Interview: Stirrup Queen

April 16, 2008 · Filed Under e-patient stories, others' e-patient stories · 9 Comments

Cheryl Miller has written an excellent article, “Blogging Infertility,” in The New Atlantis. She brings up a lot of themes that have been echoing throughout my other reading: a once-silent group newly empowered by the internet; teaming patients with similar profiles; home-care tips (there could be a whole blogroll on injections, btw, starting with AmyT , heading over to Spicy Sister, then Lisa).

One of my favorite parts of the article was an explanation of this alphabet soup:

I am Tertia, I am 35 yrs old, dh is 30, TTC 4 yrs, dx = PCOS, stage II endo, irregular AF and I don’t O on my own. 3 x injectible IUI’s, all BFN. IVF #1 = cancelled due to falling E2’s. IVF #2, zero fert, rescue ICSI, BFN. IVF#3 = BFP, but ectopic, 3 x FET’s = BFN, IVF #4 = BFP, but MC 8w3d due to T21, IVF #5 = BFP, twins, loss of one at 21w, the other born 25w6d, died after 10 days in NICU.

If you squint this could be the sig line for an ACOR subscriber or other e-patient community member.

Another favorite outcome of reading the article was my reconnection with Melissa, creator of the blog Stirrup Queens and Sperm Palace Jesters, whom I met standing in the check-out line at Peggy Orenstein’s reading of Waiting for Daisy last year in DC. Melissa was kind enough to answer a few questions about being an e-patient, evaluating treatment choices, and combating stereotypes.