The lived experience of hypermobile Ehlers–Danlos syndrome and hypermobility spectrum disorders in the United Kingdom:... 2026 Berg and Dockrell

[Andy]

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

Abstract
Purpose

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.

Materials and Methods

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.

Results

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.

Conclusions

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.


Implications for rehabilitation

• 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.

Open access

 

[Andy]

"The most common co-occurring conditions diagnosed within the study population were anxiety (70.8%), depression (63.3%), migraine (53.5%), dysautonomia/postural orthostatic tachycardia syndrome (45.2%), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (30.5%), and Raynaud’s phenomenon (30.2%)."

"Participant reports of misdiagnoses such as ME/CFS, fibromyalgia and functional neurological disorder reflect existing concerns about diagnostic overshadowing in this patient population, and likely contribute to the lengthy “diagnostic odyssey” observed in people living with hEDS/HSD [Citation3,Citation31]. "

 

[Jonathan Edwards]

There is a problem if 90% of cases are female since EDS is by definition autosomal dominant with equal sex incidence or sex linked recessive with a major male predominance.

Women are more (joint) mobile than men so this seems likely to be a population of relatively mobile women who have sought a diagnosis for a range of symptoms. The preponderance of clinical features could easily be just a reflection of private referral pathways.