Patients with hypermobility disorders often face decades of delays in diagnosis and struggle to access specialized care for symptoms like fatigue, pain, and digestive issues.
Key facts
- •Patients with hEDS and HSD in the UK wait an average of 19 to 21.7 years for a diagnosis.
- •Only 13% of diagnosed patients reported having access to a knowledgeable clinician.
- •HSD symptoms can be triggered or worsened by environmental stressors such as puberty or menopause.
- •Physiotherapy is often recommended to strengthen muscles that stabilize the skeleton.
- •Research suggests HSD and hEDS may disproportionately affect women.
Hypermobility Spectrum Disorders (HSD) and hypermobile Ehlers-Danlos Syndrome (hEDS) are connective tissue conditions that cause joints to have an excessive range of motion. While the disorders may affect hundreds of thousands of people in the UK, patients often face significant delays in receiving a diagnosis. Research from the University of Edinburgh indicates that those affected wait an average of 19 to 21.7 years to be diagnosed.
By the numbers
Symptoms and Challenges
HSD occurs when lax collagen causes muscles to work harder to stabilize joints, leading to fatigue, pain, and clumsiness. Because connective tissue is also present in the digestive system, patients may experience gastrointestinal symptoms. Research has also identified links between these disorders and neurodiversity, including autism and ADHD.
Barriers to Care
The diagnostic process is complicated by a lack of dedicated clinical guidelines from the National Institute for Health and Care Excellence. Experts describe the availability of assessments as a 'postcode lottery,' with research showing that under a third of diagnosed patients received management plans from their GP. Many patients report feeling unsupported and struggle to find information, sometimes relying on social media to understand their conditions.
Management and Research
While there is no single cure, treatments such as physiotherapy to strengthen muscles can help manage symptoms. Experts note that symptoms may worsen following environmental stressors like puberty, menopause, or potentially Covid. Clinicians emphasize that more attention and government recognition are required to improve patient outcomes and access to knowledgeable care.
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This article was independently rewritten by ManyPress editorial AI from reporting originally published by BBC Health.
