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 […]
patient networks
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 […]
Wow! How? Patient-Led Research
A scientific journal article written primarily by patients about their health condition has been downloaded over a million times. We reached this milestone after years of activism, advocacy, and demands for justice. The internet supercharged everyone’s ability to connect with information and with each other. The crucible of the pandemic then forced us into new […]
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 […]
Wow! How? Health
Wow! How? Health is a LinkedIn newsletter that will feature the Wow! stories of patients, survivors, and caregivers who are doing extraordinary things, along with the How? lessons that we all can learn. Subscribe to the newsletter or to my blog (I’ll cross-post here). Today’s story is about how connecting with a peer, a “just-in-time someone-like-you,” can make all the […]
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