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Susannah Fox

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Self Advocate

E-patient Interview: Sheryl Stein

May 1, 2008 By Susannah Fox 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 […]

Filed Under: e-patient stories, others' e-patient stories Tagged With: blog, chronic disease, Common Variable Immunodeficiency, community, CVID, Delivery Methods, Diagnosis, Diagnostician, e-patient, Gammaglobulin Therapy, Health Care Decisions, Humor On, Immune Deficiency Foundation, Ingrained Habit, Listserve, NIH, No Doubt, Pamphlets, Patient Interview, Patient Interviews, patient networks, Pharmaceutical Company, Pros And Cons, Self Advocate, self-care, Whopper

E-patient Interview: Stirrup Queen

April 16, 2008 By Susannah Fox 7 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 […]

Filed Under: e-patient stories, maternity, others' e-patient stories Tagged With: Cheryl Miller, Community Member, Ectopic, Endo, Health Care Decisions, New Atlantis, Nicu, Patient Community, Patient Interview, Peggy Orenstein, pregnancy, Reconnection, Self Advocate, Stirrup, Treatment Choices, Waiting For Daisy, Waiting Rooms

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Recent Comments

  • Susannah Fox on Rare Disease in the NYT: “Captivated is such a good description of how I felt, too. I read the essay once through quickly, then a…” Apr 25, 11:12
  • Anonymousity on Rare Disease in the NYT: “I was captivated by Amanda Hess’s story. I too dove right in in reading all the way through the article…” Apr 25, 09:24
  • Susannah Fox on Rare Disease in the NYT: “Thank you, Dave! Yes, I’ve been a fan of Hess’s writing for a long time and now, well, I’m a…” Apr 23, 22:00

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