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Susannah Fox

I help people navigate health and technology.

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Marfan syndrome

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

Wow! How? Drug Interactions

November 3, 2023 By Susannah Fox Leave a Comment

Two sets of hands sort pills into a pillbox

This is a cross-post from my LinkedIn newsletter. Feel free to join the conversation there or post your thoughts in the comments below. People who connect with health peers are able to pool knowledge, track data, and disseminate what they learn. For some, it’s the difference between life and death. For example, Peggy, a woman […]

Filed Under: Networkers, patient networks, peer-to-peer health care, Seekers Tagged With: drugs, kidney disease, Marfan syndrome, medical errors, Networkers, Rebel Health, Seekers, Wow! How? Health

Wow! How? Diagnosis

October 26, 2023 By Susannah Fox 5 Comments

Questions marks painted on pavement

“Anne” is a mother I met in my fieldwork who was happy to share her story, but not her name.  Her son had become sick very suddenly, complaining of a combination of symptoms that were difficult to pinpoint. Anne took him from one specialist to another, who performed test after test, but they could find […]

Filed Under: patient networks, peer-to-peer health care, Seekers Tagged With: Diagnosis, Ehlers Danlos, Marfan syndrome, POTS, Rebel Health, Seekers, Wow! How? Health

Unrest

January 8, 2018 By Susannah Fox 1 Comment

Jennifer Brea, director of the film Unrest, lies in bed with EEG leads on her head

The film “Unrest” will debut on Independent Lens this week (check your local listings — in the DC area it will air on Jan. 12 at 10:30pm on WETA). I couldn’t wait and bought my own digital copy on Amazon. Let me just say: It’s no surprise that it’s on the short list for an Academy […]

Filed Under: e-patient stories, key people, patient networks, peer-to-peer health care, policy issues Tagged With: chronic fatigue syndrome, Jennifer Brea, Marfan syndrome, ME/CFS, myalgic encephalomyelitis, peer-to-peer healthcare, Rare Disease, rare diseases

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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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