Managing my crooked life with Ehlers-Danlos syndrome
I’m pretty sure that if I were an instrument, I’d be an accordion: stretched out on one side, squinched up on the other. Sometimes as I walk along, in fact, I can actually experience…

An avid equestrian and educator based in Virginia, Karen Del Vecchio was diagnosed with Ehlers-Danlos syndrome in 2009 after years searching for a diagnosis that explained her symptoms. Since her diagnosis at the Johns Hopkins Connective Tissues Disorder Clinic, she has worked to find ways to manage her symptoms while still maintaining an active lifestyle. Karen enjoys working with her students, riding and caring for her two horses, Cherry and Spotty, and connecting with others in the rare disease community through her writing.
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