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Susannah Fox

I help people navigate health and technology.

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Seekers

Wow! How? Mystery vs. Moms

May 24, 2024 By Susannah Fox 3 Comments

Wow! How? Health

When her daughter, Sara, transformed from an active teen to a nearly catatonic shell of a person, Eileen Quinn knew she had to take action. Unfortunately, since Sara lives with Down syndrome her symptoms were likely to be dismissed as sad but inevitable. But Quinn had a hunch that her daughter’s rapid decline was not […]

Filed Under: Champions, Networkers, Seekers Tagged With: Down syndrome, Eileen Quinn, Jonathan Santoro, Rebel Health, Richard Sima, Washington Post, Wow! How? Health

Discovery Diaries with Damon Davis

May 16, 2024 By Susannah Fox Leave a Comment

Rebel Health: A field guide to the patient-led revolution in medical care

Damon Davis has a new podcast, Discovery Diaries, and I was honored be among his first guests. We got into a wide range of topics: the origins of my interest in patient-led innovation; artificial intelligence and how patients, survivors, and caregivers should be included in the design of AI tools; our time working together at […]

Filed Under: Champions, Networkers, Seekers, Solvers Tagged With: AA, Ben West, Black Panther Party, Bryan Mazlish, caregivers, Damon Davis, Dana Lewis, diabetes, E-Patient Dave, Fda, food allergy, Hhs, Hugo Campos, Jane Sarasohn-Kahn, peer-to-peer healthcare, Regina Holliday

The Other 80

April 22, 2024 By Susannah Fox 2 Comments

Screenshot from Derek Sivers' TED talk How to start a movement

Claudia Williams created The Other 80 podcast to talk about how medical care only accounts for 20% of health outcomes. The other 80% includes factors like food, housing, transportation options, social connection, etc. I was honored to be interviewed for episode #27, now available wherever you listen to podcasts. You can hear in my voice […]

Filed Under: Champions, Networkers, peer-to-peer health care, Seekers, Solvers Tagged With: #wearenotwaiting, Claudia Williams, Dana Lewis, Derek Sivers, Hugo Campos, John Costik, Open Notes, Patient-Led Research Collaborative, Rebel Health, Sara Riggare, Stanford Medicine X

Rebel Health Audiobook

April 9, 2024 By Susannah Fox 2 Comments

Close-up of typewriter keys

I’m very happy to report that the audio version of my book, Rebel Health, is now available from Libro.fm, Chirp, and Audiobooks.com. It is narrated by Kim Niemi, whose voice has been described as “soothing, soulful, and powerful.” I love the samples the publisher chose (click on the links above to play them). Here’s the […]

Filed Under: peer-to-peer health care, Seekers Tagged With: MIT Press, Moebius Syndrome, National Organization For Rare Disorders, Rebel Health

Public Q&A: “I received scary test results. What questions should I ask my clinician?”

March 26, 2024 By Susannah Fox 8 Comments

Questions marks painted on pavement

Sometimes the hardest part of a new situation, in any aspect of life but particularly our health, is saying out loud the scary thing. Someone dear to me received concerning test results and asked me to help craft a set of questions for their next appointment – the very first one since getting the results […]

Filed Under: peer-to-peer health care, public Q&A, Seekers Tagged With: David Harlow, Elizabeth Cohen, Gilles Frydman, Jennifer Sweeney, Jessie Gruman, Rebel Health, Seekers

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

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Recent Comments

  • Lisa Suennen on Wow! How? Community: “That is a beautiful story. Kids always have the best answers” Aug 29, 11:31
  • Susannah Fox on Lessons learned about hospice care: “Zoe, thank you for the unvarnished comment! We need to go into end of life with our eyes open in…” Aug 5, 14:20
  • Zoe on Lessons learned about hospice care: “I despise home hospice and the entire industry can kiss my ass. I was duped into caring for my dying…” Aug 5, 03:45

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