She can do every yoga pose there is, but it was not until she turned 58 that she realised that this bendiness was not a good thing. In fact, it was the answer to all of the strange health problems she had been experiencing for years - issues with digestion, fatigue, and pain. Earlier this year, when Vivienne came across a video on social media explaining the symptoms of Hypermobility Spectrum Disorder, it was like a light bulb switching on.
"I saw myself in everything they were saying," she tells me. "So I armed myself with all the information and went to my doctor." Vivienne's hunch was confirmed - she had hypermobile joints. "I had all these separate things, but no one had ever put them all together.
Now it's blindingly obvious." The disorder may affect hundreds of thousands of people in the UK, but many - like Vivienne - face significant delays in getting a diagnosis. Hypermobility Spectrum Disorders (HSD) are connective tissue disorders that cause joint hypermobility - when joints have a greater-than-normal range of motion. Due to lax collagen between connective tissues, muscles have to work harder to keep joints stable, leading to fatigue and pain, as well as clumsiness.
HSD can also cause gastrointestinal symptoms because the connective tissue within the digestive system is stretchier. Links between HSD and neurodiversity such as autism and ADHD have also been established. Some people, like Vivienne, also have hypermobile Ehlers-Danlos Syndrome (hEDS), which is diagnosed by looking for hypermobility and faulty connective tissue throughout the body, as well as musculoskeletal issues like dislocations.
Hypermobility disorders may affect hundreds of thousands of people in the UK, though many remain undiagnosed, according to new research, external from the University of Edinburgh. It found patients with hEDS and HSD in the UK waited an average of 19 to 21.7 years for diagnosis. The diagnostic process for HSD is complicated by the fact the National Institute for Health and Care Excellence does not have a dedicated, standalone clinical guideline for diagnosis.
Dr Jessica Eccles, a researcher on brain-body interactions and hypermobility, says diagnosis can be a "postcode lottery in terms of where you are and what opportunities are available to you for assessment". She adds that HSD and hEDS seem to affect women more. "We know that women's health is not necessarily as well-researched as problems affecting men." The research found that under a third of those diagnosed said their GP had initiated management for the disorder, and only 13% had access to a "knowledgeable clinician".
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