UK patients waiting 21 years for hypermobility diagnosis
Researchers are calling for greater awareness of the condition, which can cause chronic pain and fatigue
Sufferers of hypermobility in the UK are being left to wait up to 21 years for a diagnosis, according to a new study.
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Those with hypermobility conditions also experience symptoms including chronic pain, dislocated joints, fatigue and gastrointestinal problems, the survey found.
The University of Edinburgh-led study of more than 2000 people found patients waited an average of 19 to 21.7 years for diagnosis, while many respondents travelled outside of their home nation to be diagnosed.
The majority - 83.9% of patients - reported chronic pain, while 73.8% experienced partially dislocated joints and 66.3% had gastrointestinal symptoms.
Many reported it impacted their employment, education, and mental health.
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Researchers said it suggested awareness of hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS) was limited.
Respondents from Wales were left waiting the longest for a diagnosis, at 21.7 years on average between symptom presentation and diagnosis.
The figure was 21.1 years for Northern Ireland, 19.5 for Scotland and 19 for England.
The study also revealed that many people travel for a diagnosis, with 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.
People in England were most likely to receive a diagnosis within their country of residence, at 97.6%.
Kathryn Berg, trial and research manager at the university’s Institute of Genetics and Cancer, said: “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.”
Almost half of respondents to the survey (45.6%) were unemployed, 55.9% reported disrupted education and 47.9% received disability-related benefits.
The study also found 20.4% of respondents reported having autism spectrum disorder, 18.1% ADHD and 15.3% dyslexia.
Researchers said hEDS and HSD should be understood as complex multisystem conditions rather than disorders defined only by joint hypermobility.
They are now calling for greater awareness, and multidisciplinary services alongside and approaches reflecting neurodivergent needs.
Scottish public health minister Maree Todd said: “We recognise the importance of timely diagnosis and the positive difference it can make for people living with Ehlers-Danlos syndromes and hypermobility spectrum disorders.
“Through Scotland’s rare disease action plan, we are taking forward actions to improve support for people with Ehlers-Danlos syndromes and hypermobility spectrum disorders.
“This includes work to improve diagnosis, through education and increased awareness among healthcare professionals.”
A Welsh Government spokesperson said the journey to diagnosis could be "long and complicated" and that it had developed a "draft community health pathway"to help people receive more consistent care.
A UK Government spokesperson said: “People living with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders deserve to have their symptoms recognised and taken seriously, and we know long waits for a diagnosis can have a significant impact on patients and their families.
“A toolkit developed by the Royal College of General Practitioners, in partnership with EDS Support UK, has been made available to clinicians to support them to recognise and manage these complex conditions by improving awareness and consistency of care."
A spokesperson for Northern Ireland’s Department of Health said the conditions were often "complex and challenging to diagnose and treat" due to the range of possible symptoms.
They added they would "monitor the progress of the Welsh initiative" and consider the evidence.