Ehlers-Danlos syndromes (EDS) are genetic connective tissue disorders with body-wide symptoms which can be disabling, affecting all aspects of life. They can affect anyone. Symptoms include musculoskeletal problems, chronic pain and fatigue, gastrointestinal disturbance, pelvic and bladder problems, autonomic dysfunction and anxiety. Thirteen different types have been classified. The most common type, hypermobile EDS (hEDS), is difficult to diagnose as there is no single test. Hypermobility spectrum disorders (HSD) present many of the same symptoms and share the same diagnostic challenge as hEDS. Together, hEDS and HSD are fairly common (possibly affecting 1 in 500 people,so almost 4,000 in Northern Ireland). The average time to diagnosis in the UK is 10-14 years.

Undiagnosed and untreated EDS and HSD is putting pressure on the NHS through multiple appointments with no clear outcome and inappropriate treatments. Early diagnosis and management can prevent disability.

To date, the diagnosis and management of people with hEDS or HSD has relied on the personal interest and knowledge of a small number of clinicians rather than formally commissioned services. Patients with hEDS or HSD are not receiving the care and support they need and too often do not receive referrals to specialists who have the expertise necessary to diagnose these conditions and advise on treatment. We believe this constitutes a lack of equality in access to healthcare for those with hEDS and HSD, which has resulted in unacceptable suffering for some patients. 

Properly commissioned services are urgently needed for the diagnosis and treatment of EDS and HSD in Northern Ireland.