Tal Golesworthy lives with Marfan syndrome, which is characterized by long bones, flexible joints, eye problems, and, most threateningly, weakness at the root of the aorta. Over time, this major blood vessel becomes enlarged and, if left untreated, ruptures. Clinicians told Golesworthy he had few options, none of them attractive: wait and potentially experience a […]
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Wow! How? Eating disorder recovery
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? 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 […]
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 […]
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