Surviving Their Stripes: the Diagnostic Odyssey and Impact of Life with Hypermobile Ehlers-Danlos Syndrome

Abstract

Background: Hypermobile type Ehlers-Danlos Syndrome (hEDS) is subtype of Ehlers-Danlos Syndrome that is a genetic connective tissue disorder with complexities involving joint hypermobility, tissue fragility and severe pain. Patients often experience misdiagnosis, medical dismissal and years of waiting for a diagnosis. Purpose: This study aims to evaluate the quality of life and diagnostic journey for patients living with hEDS.https://scholarworks.uark.edu/coesym25/1008/thumbnail.jp