“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 […]
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Wow! How? Moebius Syndrome
There are seven universal facial expressions, understood across all cultures: happiness, surprise, contempt, sadness, anger, disgust, fear. Someone’s ability to recognize – and use – those expressions helps them navigate in the world. Historically, people with expressive faces – a big grin, for example – were perceived as happier than those who did not smile […]
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? 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? 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 […]
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