Hypermobility spectrum disorder turned out to be the answer to the mystery behind Vivienne Duval’s chronic health problems. Despite her remarkable flexibility and ability to perform every yoga pose, it wasn’t until she was 58 that she realized this trait hadn’t always been something positive in her life.
The discovery also explained the chronic symptoms she’d experienced, including digestive issues, fatigue, and pain. For years, medical answers had come in fragments, with no one connecting the symptoms to one another.
Earlier this year, Vivienne came across a social media video describing symptoms of a condition known as Hypermobility Spectrum Disorder. She decided to see a doctor after recognizing every symptom the video described.
The doctor confirmed her suspicion: she had hypermobile joints. “I had all these separate symptoms, but no one had ever connected them. Now it’s obvious,” she says.
The Link Between Hypermobility, Hypermobile Ehlers-Danlos Syndrome (hEDS), and Neurodivergence
The condition is estimated to affect hundreds of thousands of people in the UK, though many, like Vivienne, face significant delays before getting diagnosed.
At its core, the condition involves connective tissue disorders that cause joint hypermobility, meaning a greater range of motion than normal. Loose collagen between tissues forces muscles to work harder to stabilize joints, leading to fatigue, pain, and clumsiness.
HSD can also cause gastrointestinal symptoms, due to the increased elasticity of connective tissue in the digestive system.
Links have also been found between hypermobility and neurodivergent conditions such as autism and ADHD. In some cases, as with Vivienne, patients are also diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS), characterized by hyperactivity and defective connective tissue throughout the body, along with musculoskeletal problems such as joint dislocations.
Why Can Diagnosis Take Years?
According to recent research from the University of Edinburgh, hypermobility disorders may affect hundreds of thousands of people in the UK, with many going undiagnosed for years.
The research found that patients with both hypermobility and hypermobile Ehlers-Danlos syndrome waited an average of 19 to 21.7 years before receiving a diagnosis.
The diagnostic process is complicated by the absence of specific clinical guidance from the National Institute for Health and Care Excellence.
Dr. Jessica Eccles, who researches the brain-body connection and hypermobility, notes that diagnosis often depends on where a person lives and what assessment options are available locally. She adds that these diagnoses appear to affect women more. “We know that women’s health hasn’t been researched as thoroughly as conditions affecting men,” she notes.
According to the study’s findings, fewer than a third of diagnosed patients said their GP took on management of the condition, while only 13% had access to a doctor with specialized knowledge in the area.
Patients Don’t Know Which Doctor to See
The inability to access appropriate support leaves many patients unsure where to turn, according to Dr. Stephanie Barrett, a specialist physician and rheumatologist. She says she often sees patients unable to work due to severe “brain fog” linked to hypermobility.
