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Vivienne Duval has always been extraordinarily flexible, able to master every yoga pose with ease. However, it was only at the age of 58 that she recognized this flexibility might be linked to the health issues she had grappled with for years, including digestive troubles, persistent fatigue, and chronic pain. Earlier this year, after watching a social media video describing the symptoms of Hypermobility Spectrum Disorder (HSD), Vivienne felt as though a lightbulb had turned on. “I saw myself in everything they were saying,” she recalls. Motivated by this realization, she gathered information and consulted her doctor, who confirmed that Vivienne indeed had hypermobile joints. She reflects, “I had all these separate things, but no one had ever put them all together. Now it’s blindingly obvious.”
Hypermobility Spectrum Disorders are conditions affecting connective tissue, characterized by joints that extend beyond the typical range of motion. This excessive flexibility stems from lax collagen in connective tissues, resulting in muscles having to compensate to stabilize joints, which often causes pain, fatigue, and clumsiness. In addition to musculoskeletal symptoms, HSD can produce gastrointestinal problems owing to increased stretchiness in the digestive system’s connective tissues. Research has also indicated associations between HSD and neurodivergent conditions such as autism and ADHD. Some individuals, including Vivienne, have hypermobile Ehlers-Danlos Syndrome (hEDS), a diagnosis made by noting hypermobility, defects in connective tissue throughout the body, and issues such as frequent joint dislocations.
Despite potentially affecting hundreds of thousands of people in the UK, many with hypermobility disorders remain undiagnosed for extended periods. A recent University of Edinburgh study revealed that patients with hEDS or HSD often wait between 19 and nearly 22 years before receiving a diagnosis. Complicating matters further, the National Institute for Health and Care Excellence (NICE) lacks a specific guideline to aid in the diagnosis of these disorders. Dr Jessica Eccles, a researcher focused on brain-body interactions in hypermobility, describes the diagnostic process as a “postcode lottery,” dependent on geographical location and the availability of knowledgeable healthcare providers. She notes that HSD and hEDS appear to predominantly affect women and points out that women’s health issues are frequently under-researched. The study also found that less than a third of diagnosed patients had their condition managed by a general practitioner, and only 13% had access to clinicians with expertise in the disorder.
The challenges do not end with delayed diagnosis. Many patients find themselves without clear pathways to effective treatment or support. Consultant physician Dr Stephanie Barrett highlights that she often encounters patients hindered by “severe brain fog” linked to hypermobility who are unable to maintain employment. Vivienne expresses similar frustration: “I need to be able to help myself and I don’t know where to go. I’m finding out about this condition on social media.” This dual reaction of relief and exasperation is common among patients, as this disorder connects a range of symptoms they previously thought to be disconnected. For younger sufferers like Luke Grindlay, diagnosed with HSD in early childhood, the condition’s variable and unpredictable impact often leads to uncertainty and feelings of doubt about the legitimacy of their pain, compounded by scarce information. As symptoms can worsen with age or following environmental stressors such as puberty, menopause, or even Covid-19, treatment options like physiotherapy and gentle exercise become essential, although Dr Barrett cautions that simply advising patients to “do a bit of physio” is insufficient without broader awareness and coordinated support from healthcare systems and government bodies
Read the full article from The BBC here: Read More
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