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Susannah Fox

I help people navigate health and technology.

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mitochondrial disease

Wow! How? Community Consults

February 1, 2024 By Susannah Fox Leave a Comment

Wow! How? Health

“Lana,” a woman I interviewed who asked that her real name not be used, lives with mitochondrial disease and is an active member of a private Facebook group of people who share her diagnosis. Some of the members have become experts in drug interactions particular to “mito” and offer guidance to others based on their […]

Filed Under: Networkers, patient networks, peer-to-peer health care, pt/doc co-care, Seekers Tagged With: Facebook, Jack Saul, mitochondrial disease, Rebel Health, Wow! How? Health

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

Save us, Facebook

November 20, 2014 By Susannah Fox 24 Comments

Erin and Drew

The Reuters story about Facebook taking its “first steps into healthcare” read like an announcement that Las Vegas was getting into entertainment or that New York City was getting into fashion. Extraordinary health communities have grown up between the cracks of Facebook’s platform. It’s just that up until now executives publicly looked the other way. […]

Filed Under: e-patient stories, peer-to-peer health care Tagged With: cystic fibrosis, Erin Moore, Facebook, Inspire, mitochondrial disease, patientslikeme, Smart Patients

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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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