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A84 - Hidden Zebras: Isolating experiences managing pain, depression and anxiety in Ehlers-Danlos Syndrome
A84 - Hidden Zebras: Isolating experiences managing pain, depression and anxiety in Ehlers-Danlos Syndrome
Mentor: Cameron Hay-Rollins, Ph.D.
Hypermobile Ehlers-Danlos Syndrome (hEDS) is a poorly understood and difficult to diagnose connective tissue disorder resulting from genetic and epigenetic processes affecting collagen formation. Systemic symptoms include joint instability, chronic pain, fatigue, and mental health disorders. There is no biomarker for diagnosis, and given that symptoms are diffuse, it is unsurprising that it takes patients years to receive a diagnosis. Once diagnosed, finding providers versed in managing the scope and progression of the disease is rare. The result is that people with hEDS live with a largely invisible condition that profoundly impacts their quality of life but are left to manage it on their own.