Diagnosis delays in hypermobile Ehlers-Danlos Syndrome and hypermobility spectrum disorders a synthesis of qualitative literature

Abstract

Hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders (hEDS/HSD) represent a group of connective tissue disorders characterized by joint instability, tissue fragility, chronic pain, and multisystem dysfunction leading to disability and reduced quality of life. Diagnosis delays of hEDS/HSD are common, and may be 20 years or more. The reasons for these lengthy diagnosis delays is unclear.