Overview
- A University of Edinburgh–led online survey of more than 2,000 people, reported on Monday, found average waits of 19 to 21.7 years between first symptoms and diagnosis for hypermobile Ehlers‑Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD).
- The research documents widespread multisystem problems including chronic pain, gastrointestinal symptoms and high rates of anxiety and depression that drive disrupted education, high unemployment and reliance on disability benefits.
- Respondents commonly reported fragmented services and low clinician awareness, with many forced to travel outside their home nation for assessment—more than a third of Welsh respondents and 39% in Northern Ireland said they left their country to get a diagnosis.
- Patient testimony describes long NHS waits and scarce specialist care in places like Scotland, and campaigners together with study authors are calling for formal multidisciplinary pathways integrating rheumatology, pain management, physiotherapy, occupational therapy and psychological support.
- Scotland and Wales have acknowledged the findings and outlined steps: Scotland points to actions under its rare disease plan and Wales says a co‑produced draft community pathway is awaiting clinical endorsement, which could be a model to improve diagnosis and local care access.