Revenge of the gaslit patients: Now they’re Ehlers-Danlos scientists – STAT
ype “Ehlers-Danlos syndromes” into a search engine, and multiple suggestions pop up. Is Ehlers-Danlos an autoimmune disease? Is EDS hereditary? Rare?
Then, the algorithm might suggest: Is Ehlers-Danlos syndrome a disease?
“Is EDS real?”
The latter is a question that really annoyed Cortney Gensemer, a postdoctoral researcher who studies and has EDS. How could people — even doctors — not believe in a group of illnesses that have inflicted tangible symptoms on her and several of her relatives? Patients might look healthy, their tests might show no signs of disease, but they endure repeated joint dislocations, headaches and pain, as well as gastrointestinal issues, fatigue, and stretchy and fragile skin. All of these symptoms are present in some forms of EDS. Gensemer has the most common of the 14 subtypes, called hypermobile EDS.
But since, unlike the other 13 types, hEDS has no known gene, it stays in medicine’s gray area.
No matter. Gensemer, like many angry women before her, used…
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