The flexibility that became a nightmare: a hidden disease affects hundreds of thousands

Vivian Duval, 58, from the UK, discovered that her extraordinary flexibility, which allowed her to perform any yoga pose, was actually a sign of a hidden disease that caused her great suffering for years. For many long years, she dealt with digestive problems, fatigue, and pain without understanding their source. Only after watching a video on social media that explained the symptoms of Hypermobility Spectrum Disorder (HSD) did she realize this was her condition. Her doctors confirmed her suspicion: she suffers from hypermobile joints.

Hypermobility Spectrum Disorder (HSD) is a connective tissue disorder that causes joints to have a greater range of motion than normal. Loose collagen in the connective tissues forces muscles to work harder to stabilize the joints, which leads to fatigue, pain, and lack of coordination. The disorder can also cause symptoms in the digestive system due to excessively flexible connective tissue. A new study found that hundreds of thousands in the UK suffer from the disorder, but many remain undiagnosed for decades.

The diagnostic process is complex due to the lack of dedicated clinical guidelines. Dr. Jessica Eccles, a researcher in the field, noted that the disorder is more common among women and that women's health is not researched enough. Less than a third of those diagnosed received primary care from a family doctor, and only 13% gained access to a doctor with knowledge in the field. This situation leaves many patients, including Vivian, feeling unsupported and reliant on information from social media.

Those suffering from the disorder deal with joint pain, fatigue, digestive problems, and brain fog, which affect their professional and social lives. Symptoms may worsen after stressful events such as puberty, menopause, and even after contracting COVID-19. Although there is no single magic solution, physiotherapy and gentle physical activity like swimming can help.