SearchOver 2,000 voices. One clear message: people with hEDS & HSD are being let down. Let’s Make May Matter.
- 9 April, 2026
We are thrilled to announce that the hEDS START research has been published in the Disability and Rehabilitation journal.
This impo
rtant study helps to build the evidence base around these often misunderstood conditions.
Kathryn Berg and Dervil Dockrell undertook the study at the University of Edinburgh, exploring the lived experience of individuals with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD) in the UK during 2023–2024. EDS UK supported the promotion of the study, resulting in over 2,000 participants.
Kathryn and Dervil are passionate advocates for improving awareness, understanding, and care for these conditions. They have also generously donated many hours of their time to support initiatives in Holyrood, helping to educate MSPs about the urgent need for effective care pathways.
The study included both a questionnaire and a focus group, which EDS UK supported. In the focus group, individuals worked together to define what a good care pathway for hEDS and HSD should look like.
The findings highlight significant challenges faced by the community. Participants reported diagnostic delays of 19–20 years across the UK, substantial regional variation, and widespread health inequalities. Many described a reliance on private healthcare, despite having to reduce or give up work due to their condition.
The study also sheds light on the symptoms people are living with. Over 83% of respondents reported chronic pain, more than 73% experienced joint subluxations, and over 66% reported gastrointestinal issues. There was also a high rate of neurodivergence among participants.
In addition, the impact on daily life is profound. Over 45% of respondents reported unemployment, more than 55% experienced disrupted education, and over 47% relied on benefits.
Kathryn said – “This study confirms what so many people with hEDS/HSD have been telling us for years, that the impact of these conditions goes far beyond joint hypermobility. The hEDS-START participants describe long diagnostic delays, fragmented care, and significant impacts on education, employment, and mental health. What stands out most clearly is the urgent need for coordinated, multidisciplinary pathways that are co-designed with patients. People living with hEDS and HSD deserve earlier recognition, equitable access to knowledgeable professionals, and support that reflects the full complexity of their lived experience.”
Building on these findings, it is clear that change is urgently needed. People with hEDS and HSD should not have to wait decades for answers or navigate fragmented systems that fail to meet their needs. This research provides powerful evidence to support what our community has long known—and strengthens our collective voice for better care.
This is why we’re asking you to help us Make May Matter.
Throughout May, we are raising awareness of Ehlers-Danlos syndromes and hypermobility spectrum disorders, shining a light on the realities highlighted in this study. By getting involved, you can help ensure that healthcare professionals, policymakers, and the wider public understand the scale and impact of these conditions.
Whether you share your story, support our campaigns, fundraise, or help spread the word, every action brings us closer to a future where people with hEDS and HSD are recognised earlier, treated appropriately, and supported to live well.
Together, we can turn evidence into action.
Together, we can Make May Matter.