Key facts
- UK patients with hypermobility conditions face diagnostic waits of up to 21 years.
- A study of over 2,000 individuals found low awareness of HSD and hEDS among UK healthcare professionals.
- Nearly half of respondents were unemployed, and over half reported disrupted education due to their conditions.
- Eighty-four percent of respondents reported chronic pain, with many also experiencing joint dislocations and other systemic symptoms.
- Patients in Wales reported the longest average diagnostic journey at 21.7 years.
- A toolkit has been made available to clinicians to improve recognition and management of these conditions.
A significant study has revealed that individuals in the UK suffering from hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS) face diagnostic waiting times of up to 21 years. The research, conducted by the University of Edinburgh and surveying over 2,000 people, indicates a critical lack of awareness among British healthcare professionals regarding these connective tissue disorders.
The conditions, which affect connective tissue throughout the body, are associated with a wide range of debilitating symptoms including joint hypermobility, chronic pain, fatigue, and neurological, gastrointestinal, and psychological issues. The study found that these prolonged diagnostic delays lead to fragmented healthcare, significantly impacting patients' mental health, education, and employment prospects. Nearly half of the respondents were unemployed and received disability benefits, while over half reported disrupted education.
Eighty-four percent of participants experienced chronic pain, and many reported partially dislocated joints, gastrointestinal problems, anxiety, depression, and migraines. Kathryn Berg, the trial and data manager at the University of Edinburgh's Institute of Genetics and Cancer, emphasized the profound impact of hEDS and HSD across all life aspects and called for urgent development of equitable, multidisciplinary care pathways.
The diagnostic journey varied across the UK, with Wales reporting the longest average wait of 21.7 years, followed by Northern Ireland (21.1 years), Scotland (19.5 years), and England (19 years). A notable portion of patients, particularly in Wales and Northern Ireland, had to travel to other parts of the UK to receive a diagnosis.
In response, a Welsh government spokesperson acknowledged the challenges and is working on a draft community health pathway. A UK government spokesperson highlighted the availability of a toolkit developed by the Royal College of General Practitioners and EDS Support UK, aimed at improving clinicians' ability to recognize and manage these complex conditions.