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Susannah Fox

I help people navigate health and technology.

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Rebel Health

Wow! How? Gleevec

December 21, 2023 By Susannah Fox Leave a Comment

Wow! How? Health

When Norman Scherzer’s wife, Anita, was diagnosed with a rare form of cancer in 1994, he found that the most up-to-date information was being traded among patients who were connecting via email. When a new test, a new drug, and a new clinical trial were all developed at the same time, Scherzer helped organize the […]

Filed Under: Champions, Networkers, Solvers Tagged With: Anita Scherzer, Gleevec, Life Raft Group, Norman Scherzer, Rebel Health, Wow! How? Health

Wow! How? False Boundaries

November 17, 2023 By Susannah Fox 5 Comments

Wow! How? Health

This is a cross-post from my LinkedIn newsletter. Feel free to join the conversation there or post your thoughts in the comments below.  Every single day, Emily Kramer-Golinkoff takes 30+ pills, plus insulin, and engages in hours of breathing treatments. She is a sought-after expert on patient-driven scientific discovery, having co-founded a nonprofit, Emily’s Entourage, that pursues breakthrough therapies for […]

Filed Under: e-patient stories, key people, Networkers, Solvers Tagged With: cystic fibrosis, Emily Kramer-Golinkoff, Networkers, Rebel Health, Solvers, Wow! How? Health

Wow! How? Public Access to Research

November 10, 2023 By Susannah Fox Leave a Comment

Handwritten memo authorizing the name Grateful Med for the U.S. National Library of Medicine's online searchable database of biomedical citations and abstracts

This is a cross-post from my LinkedIn newsletter. Feel free to join the conversation there or post your thoughts in the comments below. The U.S. National Library of Medicine’s PubMed indexes over 36 million biomedical research abstracts – a searchable trove of evidence that has been available to the public since 1996. It is both a national […]

Filed Under: Champions, key people, policy issues Tagged With: Champions, librarians, National Library of Medicine, pubmed, Rebel Health, 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

Wow! How? Home inventors

October 20, 2023 By Susannah Fox Leave a Comment

Tile floor of a bathhouse

Hot springs have always been therapeutic destinations, but it was a father, desperate to relieve his child’s pain, who invented the home spa. Candido Jacuzzi, a mechanical engineer, and his wife, Inez, tried everything to help their son, who was suffering from juvenile rheumatoid arthritis. Hydrotherapy helped immensely, so Candido set to work, eventually building […]

Filed Under: positive patterns, pts as teachers, Solvers Tagged With: arthritis, disability, home health care hacks, Invent Health, maker movement, Rebel Health, Solvers, Wow! How? Health

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