UK hypermobility patients face up to 21-year wait for diagnosis, study finds
Research led by the University of Edinburgh reveals that people with hypermobility conditions in the UK wait an average of two decades for a diagnosis, with many experiencing chronic pain, joint dislocations, and mental health issues.
A study of more than 2,000 people, led by the University of Edinburgh and described as the largest of its kind in the UK, has found that awareness of hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS) is low among British healthcare professionals. These conditions affect connective tissue throughout the body, causing joint hypermobility, chronic pain, fatigue, as well as neurological, gastrointestinal, and psychological symptoms.
Conducted via online survey from September 2023 to January 2024, the research reveals that nearly half of respondents were unemployed (46%) and receiving disability-related benefits (48%). Most (56%) reported disrupted education. The vast majority (84%) suffered from chronic pain; almost three-quarters (74%) experienced partial joint dislocations; two-thirds (66%) had gastrointestinal symptoms. Mental health problems were common: 71% reported anxiety, 63% depression, and 53% migraines.
The diagnostic journey varies significantly across the UK. Patients in Wales waited on average 21.7 years from symptom onset to diagnosis, Northern Ireland 21.1 years, Scotland 19.5 years, and England 19 years. Many traveled for diagnosis: over a third of Welsh and Northern Irish respondents left their region, while 17% of Scottish sufferers did the same. In England, 98% received diagnosis within their country of residence.
Researchers noted that patients face fragmented healthcare, which can severely impact mental health, education, and employment. Kathryn Berg, trial and data manager at the university’s Institute of Genetics and Cancer, emphasized the urgent need for equitable, multidisciplinary care pathways. The Welsh government acknowledged the long and complicated diagnostic journeys and is seeking clinical endorsement for a draft community health pathway. The UK government stated that a toolkit developed by the Royal College of General Practitioners and EDS Support UK is available to clinicians to improve awareness and consistency of care.
Actress and director Lena Dunham, who was diagnosed with hEDS in her late 20s, previously described how her symptoms—including migraines, fainting spells, and swollen knees—were dismissed as quirks. She highlighted the tendency to downplay pain in women and girls, a theme echoed in her book 'Famesick'.
