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

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 via 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.

Individuals with hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD) commonly experience chronic pain, fatigue, and multisystem symptoms that significantly impair daily functioning and quality of life.
Access to coordinated, multidisciplinary management (including physiotherapy, occupational therapy, and psychological support) is currently limited and often fragmented.
Supported self-management resources should be neurodivergence-informed and co-designed with patients to address both physical and psychosocial challenges in an accessible manner.

Individuals with hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD) commonly experience chronic pain, fatigue, and multisystem symptoms that significantly impair daily functioning and quality of life.
Access to coordinated, multidisciplinary management (including physiotherapy, occupational therapy, and psychological support) is currently limited and often fragmented.
Supported self-management resources should be neurodivergence-informed and co-designed with patients to address both physical and psychosocial challenges in an accessible manner.