UK hypermobility sufferers wait up to 21 years for diagnosis, study suggests
Summary
People in the UK with hypermobility conditions, like hypermobile Ehlers-Danlos syndrome (hEDS), often wait nearly 20 years or more to get a diagnosis. These conditions cause joint problems, pain, and other symptoms, but many doctors have low awareness of them, leading to delays in care and negative effects on patients’ lives.Key Facts
- Hypermobility conditions affect connective tissues and cause symptoms like joint pain, dislocations, fatigue, digestive and mental health issues.
- The study involved over 2,000 people across the UK and was led by the University of Edinburgh.
- On average, people waited between 19 and 22 years for a diagnosis, with Wales having the longest wait (about 21.7 years).
- Many patients had to travel outside their home region, especially in Wales, Northern Ireland, and Scotland, to get diagnosed.
- Most respondents (84%) reported chronic pain, 74% had partial joint dislocations, and many also had anxiety (71%) and depression (63%).
- Nearly half of the people surveyed were unemployed, and over 48% received disability-related benefits.
- The study calls for better healthcare pathways and more training for doctors to understand these complex, multisystem conditions.
- The UK and Welsh governments acknowledge the problem and are working on improving care and support for sufferers.
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