Hypermobility - the little-known 'bendy disease' that causes pain and fatigue

Vivienne Duval has always been flexible, excelling in yoga poses. However, at age 58, she realized her hypermobility was causing issues with digestion, fatigue, and pain. After watching a video about Hypermobility Spectrum Disorder (HSD) on social media, she self-diagnosed her condition. HSD affects joints, causing them to have a greater-than-normal range of motion, leading to fatigue, pain, and clumsiness.

It can also impact the digestive system and has been linked to neurodiversity conditions like autism and ADHD. In the UK, HSD may affect hundreds of thousands of people, but many remain undiagnosed, waiting an average of 19 to 21.7 years for a diagnosis. The diagnostic process is complicated by the lack of a dedicated clinical guideline by the National Institute for Health and Care Excellence.

Dr. Jessica Eccles, a researcher on brain-body interactions and hypermobility, notes that diagnosis can be a "postcode lottery" depending on location and available assessment opportunities. Dr. Stephanie Barrett, a consultant physician and rheumatologist, highlights that women are more likely to experience HSD, and many patients report severe brain fog and inability to work.

Vivienne and others with HSD face challenges in managing the condition, as it can worsen due to external stressors like puberty, menopause, or even Covid-19. Treatment options include physiotherapy and gentle exercise, but a single "magic bullet" solution is yet to be discovered.