Hypermobility patients in UK wait nearly two decades for diagnosis, Edinburgh study finds

Patients with hypermobility spectrum disorders (HSD) and the related hypermobile Ehlers-Danlos Syndrome (hEDS) in the UK wait an average of 19 to 21.7 years for a diagnosis, according to new research from the University of Edinburgh that highlights the scale of an often-overlooked condition affecting hundreds of thousands of people, the BBC reports.

The study, published in the journal Disability and Rehabilitation, found that fewer than a third of those diagnosed said their GP had initiated management of the disorder and that only 13% had access to a "knowledgeable clinician." Researchers said the diagnostic process is complicated by the fact that the National Institute for Health and Care Excellence (NICE) does not have a dedicated, standalone clinical guideline for HSD, leaving diagnosis effectively a "postcode lottery."

Hypermobility spectrum disorders are connective tissue disorders that cause joints to have a greater-than-normal range of motion. Because lax collagen between connective tissues forces muscles to work harder to stabilize joints, patients commonly experience chronic fatigue, widespread pain, clumsiness and gastrointestinal problems. Established links to neurodiversity, including autism and ADHD, have also been documented, the BBC reports.

Dr Jessica Eccles, a researcher on brain-body interactions and hypermobility at the University of Sussex, told the BBC that diagnosis "can be a postcode lottery in terms of where you are and what opportunities are available to you for assessment." She added that HSD and hEDS appear to affect women more and that "women's health is not necessarily as well-researched as problems affecting men."

The BBC's account includes case studies of patients who lived with the condition for decades before connecting disparate symptoms — digestive issues, fatigue, pain — to hypermobility. One 58-year-old woman said she only recognized her condition after watching a social media video describing HSD; a 24-year-old reporter was diagnosed earlier this year. Dr Stephanie Barrett, a consultant physician and rheumatologist, said she repeatedly sees patients in her clinic who cannot work because of "severe brain fog" linked to hypermobility and "have nowhere to go" for treatment.

Researchers and clinicians quoted by the BBC urged NICE to develop dedicated diagnostic guidance and called for more training for general practitioners, saying the absence of a clear referral pathway leaves many patients to self-diagnose online and self-manage without specialist support.

**Sources:** BBC