Social isolation prevents people from getting help. The effect is amplified among people living with serious mental illness. They are the most in need of community support, yet are the least likely to get it in a health care system that is primarily focused on clinical interventions like medication. A recent report by M. Usman, […]
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Wow! How? Dr. Reddit
A positive psychedelic experience can make you feel at one with the universe. A bad trip can make you feel psychotic. People who want a relatively safer experience have two choices: 1. Ask a friend to stay sober and be a calming guide (called a “trip sitter”) 2. Have remedies on hand to blunt or […]
Wow! How? Patient Data Rights
Until relatively recently, people living with diabetes were shut out of conversations about improving the devices that keep them alive. Device manufacturers saw clinicians as their customers, not patients, and nobody was asking them to change that stance, including the FDA. Patients and their loved ones were grateful to have insulin pumps and continuous glucose […]
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? 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: […]
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