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Susannah Fox

I help people navigate health and technology.

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Archives for April 2024

Wow! How? Hope for Henry

April 26, 2024 By Susannah Fox Leave a Comment

Cartoons of superhero kids getting medical treatments like an EEG, Central Line Dressing Change, COVID testing, and IV Placement or Blood Draw

Imagine being a little kid and facing not only serious illness, but all the uncomfortable, scary treatments associated with hospitalization: blood draws, IV placements, and scans. Then you find out that you can earn prizes for every medical procedure you go through, thanks to an incentive program called Super Rewards for Super Kids. Kids love […]

Filed Under: Solvers Tagged With: Allen Goldberg, Hope for Henry, Laurie Strongin, Rare Disease, rare diseases, Wow! How? Health

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

Wow! How? PEARS

April 12, 2024 By Susannah Fox Leave a Comment

Wow! How? Health

Tal Golesworthy lives with Marfan syndrome, which is characterized by long bones, flexible joints, eye problems, and, most threateningly, weakness at the root of the aorta. Over time, this major blood vessel becomes enlarged and, if left untreated, ruptures. Clinicians told Golesworthy he had few options, none of them attractive: wait and potentially experience a […]

Filed Under: Champions, Solvers Tagged With: Marfan syndrome, Rebel Health, Tal Golesworthy, Wow! How? Health

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

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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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