UK patients waiting decades for hypermobility diagnosis, study finds

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By Emma Wilkinson and Lucinda Cameron, PA Media

Some people with hypermobility conditions are waiting up to two decades for a diagnosis, according to research.

The study of more than 2,000 people across the UK also found that people with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD) face fragmented healthcare, with variation in access to specialist care.

Yet the conditions can have a major impact on individuals’ mental health, education and employment, the University of Edinburgh team found.

On average patients waited 19 to 21.7 years for diagnosis, while many respondents travelled outside of their home nation to be diagnosed.

More than a third of Welsh respondents (37.3%) and 39% of those in Northern Ireland reported leaving their country for diagnosis, as did 17.4% of people in Scotland.

Reporting their findings in Disability and Rehabilitation, the researchers said 83.9% of patients reported chronic pain, while 73.8% experienced partially dislocated joints and 66.3% had gastrointestinal symptoms.

In all, 70.8% reported anxiety, while depression was reported by 63.3% and migraine by 53.5%.