Revenge of the Gaslit Patients: Now, as Scientists, They’re Tackling Ehlers-Danlos Syndromes

December 12, 2022

(STAT News) – She is one of a generation of young patient-researchers, mostly women, who have hEDS and are studying the disease — its genetic sources, the way connective tissues break down, how modern diagnostic tools are failing patients, and which might be more effective, and more. They are redefining what the study of chronic disease can look like by smudging the line between patient and researcher, channeling their experiences into determined, careful science. They are showing that patient-led inquiries could be indispensable in the effort to crack complex, long-misunderstood illnesses, like hEDS.  (Read More)