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Susannah Fox

I help people navigate health and technology.

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others' e-patient stories

Parkinson’s For One Day

June 14, 2015 By Susannah Fox 10 Comments

Pill bottles

My new job is wonderfully immersive. I leave home early, come back late, and, in between, spend hours talking with people about the future of health, health care, and technology (broadly defined). The HHS IDEA Lab blog will be my outlet for sharing ideas related to the work I do there. This site will serve, as it […]

Filed Under: key people, others' e-patient stories, social media Tagged With: empathy, Parkinson's, Smart Patients

We are all fellow travelers (even if we don’t look sick)

November 22, 2014 By Susannah Fox 14 Comments

Crowd at airport

Inspired by a call for essays about e-patient travel stories:  There is an unspoken code at airport gates. Don’t touch me. Don’t touch my stuff. Don’t step in front of me unless you have a heck of a good reason, especially if I got here before you did. We mark out our territory and imperceptibly […]

Filed Under: others' e-patient stories Tagged With: mitochondrial disease

The Walking Gallery

August 27, 2012 By Susannah Fox 1 Comment

Painting of a woman and two children

If you haven’t seen The Walking Gallery firsthand, consider attending the next powwow, in Kansas City, MO, September 21-23, 2012, at the Partnership for Patients meeting. I can’t wait to Do yourself a favor and read Regina Holliday’s explanation of her latest painting, “Bone Black,” about my friend Catherine Fairchild (right). Until then Also, read […]

Filed Under: beauty and wonder, key people, maternity, others' e-patient stories Tagged With: Catherine Fairchild, Laurie Strongin, Regina Holliday, The Walking Gallery

Patient Power: Andrew Schorr–Susannah Fox

October 6, 2008 By Susannah Fox 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 […]

Filed Under: e-patient stories, others' e-patient stories Tagged With: Andrew Schorr, Better Health, Bladder Cancer, Brain Tumor, Cnn, Common Goal, Generous Support, Health Care Professionals, Health Concerns, Lung Cancer, M D Anderson, Medical Centers, Myomectomy, Patient Comments, Patient Power, Renowned Experts, Team Approach, Trusera, Uterine Fibroids, Young Adults

E-patient Interview: Keith Schorsch–Susannah Fox

June 6, 2008 By Susannah Fox 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 […]

Filed Under: e-patient stories, others' e-patient stories Tagged With: Baby Boomers Age, Consumer Survey, Facial Paralysis, Finding Health, Health And Wellness, Health Care Decisions, Health Consumer, Health Consumers, Health Experience, Huge Wave, Lyme Disease, Passive Role, Patient Interview, Patient Story, Personal Context, Personal Health Decisions, Schorsch, Skeletal Pain, Unmet Health, Wellness Issues

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

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Recent Comments

  • Susannah Fox on Public Q&A: “I received scary test results. What questions should I ask my clinician?”: “Thanks, Samantha! I love your signature line/bona fides list — you tick the boxes for “learned and loved experience” described…” May 6, 15:33
  • Samantha Bridge on Public Q&A: “I received scary test results. What questions should I ask my clinician?”: “Great conversation. It has been my experience as a nurse to have the conversation before the testing. What is the…” May 4, 09:05
  • 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

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