My book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, is out in the world! You can pick up a copy at your favorite local bookstore (mine is Politics & Prose) or order it from Barnes & Noble, Amazon, or another online retailer. Thank you for being part of this journey! I use this blog […]
peer-to-peer health care
Wow! How? Community Consults
“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 […]
Public Q&A: Rare Disease and Rebel Health
The Global Genes RARE Advocacy Summit in September 2023 provided a forum for me to talk, for the first time, about my upcoming book and how rare disease communities have been a key part of my professional life. Here’s a set of questions that Sravanthi Meka of Global Genes asked me in advance of the meeting: […]
Wow! How? Peer Support
Hank Azaria’s tribute to Matthew Perry was as much a love letter to peer support as it was a remembrance of his friend: “…as bad as we feel, as low as we go, we tend to feel we’re alone in it, whether our problem is alcoholism, a bad marriage, illness, depression, strife. We feel that […]
Wow! How? Drug Interactions
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 […]
Wow! How? Diagnosis
“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 […]
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