Hypermobility Spectrum Disorders (HSD) are connective tissue conditions characterized by joints that move beyond their normal range of motion. The disorders stem from lax collagen between connective tissues, forcing muscles to work harder to maintain joint stability. This increased muscular effort results in fatigue, pain, and clumsiness. Additionally, because connective tissue in the digestive system becomes stretchier, individuals with HSD frequently experience gastrointestinal symptoms. Researchers have also identified connections between HSD and neurodiversity, including autism and ADHD. Some individuals develop hypermobile Ehlers-Danlos Syndrome (hEDS), a more severe form diagnosed through assessment of hypermobility, faulty connective tissue throughout the body, and musculoskeletal complications such as dislocations.
Recent research from the University of Edinburgh indicates that hypermobility disorders may affect hundreds of thousands of people throughout the UK, though many remain undiagnosed. Patients with hEDS and HSD in the UK experienced an average diagnostic delay of 19 to 21.7 years. The diagnostic process is complicated by the absence of a dedicated clinical guideline from the National Institute for Health and Care Excellence. According to Dr. Jessica Eccles, a researcher specializing in brain-body interactions and hypermobility, diagnosis availability functions as a “postcode lottery” dependent on geographic location and available assessment resources. Evidence suggests HSD and hEDS disproportionately affect women, though research into women’s health conditions generally lags behind investigation of conditions affecting men.
The research revealed that fewer than one-third of diagnosed patients reported their GP had initiated management for the disorder, and only 13% had access to a clinician with specialized knowledge of the condition. Dr. Stephanie Barrett, a consultant physician and rheumatologist, reports encountering patients unable to work due to severe cognitive dysfunction linked to hypermobility. Many individuals report feeling unsupported and resort to social media for information about their condition.
HSD symptoms can worsen or emerge following physical or emotional stressors such as puberty, menopause, or illness. Treatment options exist but lack a single definitive approach. Physiotherapy and gentle exercise such as swimming may provide benefit by strengthening muscles that stabilize the skeleton. However, experts emphasize that oversimplifying treatment as merely requiring physiotherapy overlooks the complexity of these conditions. Researchers and clinicians advocate for increased clinical attention and research focus on HSD and hEDS.
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