The lived experience of hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders in the United Kingdom: findings from a national cross-sectional survey.

Abstract

This study explored the lived experiences of individuals with hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) in the United Kingdom, focusing on diagnosis, access to care, and impact on daily life. A cross-sectional, mixed-methods online survey was co-developed with patients and clinicians and disseminated <i>via</i> Ehlers-Danlos Support UK social media between September 2023 and January 2024. A total of 2002 valid responses were received. Respondents were predominantly female (90.9%). The mean diagnostic delay was 19.0-21.7 years. Regional differences and heavy reliance on private healthcare were noted. Common symptoms included chronic pain (83.9%), joint subluxations (73.8%), and gastrointestinal manifestations (66.3%), and we observed high rates of neurodivergence. High rates of unemployment (45.6%), disrupted education (55.9%), and benefit dependence (47.9%) were also reported. Our findings highlight the urgent need for equitable, multidisciplinary care pathways co-designed with patients to reduce diagnostic delay, improve care coordination, and address the wide-ranging impacts of hEDS/HSD.