Thirty million people in the U.S. will have a clinically significant eating disorder at some point in their lives. Treatment gaps mean that only a fraction of sufferers will receive the care they need due to the high cost of traditional, in-patient treatment and a scarcity of mental health professionals available for some populations and […]
Wow! How? Health
Wow! How? Hospital Alarms
Yoko Sen is a musician who, when spending time in a hospital as a patient in 2012, noticed that her cardiac monitor and another patient’s fall-risk alarm created a spooky chord known as the devil’s interval. Composers use it sparingly because it sounds so foreboding. Even in a weakened state, Sen began asking questions about […]
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 […]
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 […]
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