UK hypermobility patients wait up to 21 years for diagnosis, study finds

Individuals in the United Kingdom suffering from hypermobility conditions endure diagnostic waiting periods that can extend up to 21 years. These prolonged delays occur while patients grapple with debilitating symptoms, including chronic pain and partially dislocated joints, according to a new study.

The research, led by the University of Edinburgh and described as the largest of its kind in the UK, highlights a concerning lack of awareness regarding hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS) among healthcare professionals. These conditions affect the body's connective tissues, leading to joint hypermobility, chronic pain, fatigue, and a range of neurological, gastrointestinal, and psychological issues.

Patients diagnosed with hEDS and HSD frequently encounter "fragmented healthcare," which significantly impacts their mental well-being, educational attainment, and employment prospects. The study found that nearly half of respondents were unemployed and received disability benefits, while a majority reported disrupted education. The vast majority of participants experienced chronic pain, with substantial numbers also reporting partially dislocated joints, gastrointestinal problems, anxiety, depression, and migraines.

Kathryn Berg, trial and data manager at the university’s Institute of Genetics and Cancer, emphasized the profound impact these conditions have on all facets of life. "Our findings show the urgent need for equitable, multidisciplinary care pathways that recognise the complex and multisystemic nature of these conditions," she stated. The study also revealed significant regional disparities in diagnostic journeys, with patients in Wales facing the longest waits, averaging 21.7 years, followed by Northern Ireland, Scotland, and England.

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This study highlights the profound impact hEDS and HSD can have across every aspect of life. Our findings show the urgent need for equitable, multidisciplinary care pathways that recognise the complex and multisystemic nature of these conditions.