Hypermobility: The bendy disease with a 21-year wait for diagnosis

Vivienne Duval has always possessed remarkable flexibility, capable of executing every yoga pose imaginable. However, it was not until she reached the age of 58 that she realized this extreme bendiness was far from a positive trait, serving instead as the underlying answer to years of unexplained health struggles involving digestion, chronic fatigue, and persistent pain.

Her turning point arrived earlier this year when she encountered a social media video detailing the symptoms of Hypermobility Spectrum Disorder (HSD), creating an immediate epiphany. While this condition potentially impacts hundreds of thousands of individuals across the UK, many sufferers endure substantial delays before securing an accurate diagnosis.

Hypermobility Spectrum Disorders (HSD) and hypermobile Ehlers-Danlos Syndrome (hEDS) are classified as connective tissue disorders that induce joint hypermobility, allowing joints to surpass their normal range of motion. Because lax collagen between connective tissues forces muscles to exert extra effort in maintaining joint stability, sufferers frequently experience fatigue, pain, and physical clumsiness. Furthermore, HSD can trigger gastrointestinal complications due to increased stretchiness within the digestive system's connective tissue, alongside established links to neurodivergent conditions like autism and ADHD.

Recent research conducted by the University of Edinburgh indicates that patients with hEDS and HSD in the UK endure an average waiting period of 19 to 21.7 years for a diagnosis. This diagnostic bottleneck is further compounded by the National Institute for Health and Care Excellence lacking a dedicated, standalone clinical guideline specifically addressing the condition.

Dr Jessica Eccles, a researcher specializing in brain-body interactions and hypermobility, points out that obtaining a diagnosis can feel like a postcode lottery, heavily dependent on geographic location and available assessment opportunities. The study revealed that fewer than a third of diagnosed patients reported their general practitioner initiating management strategies, while a mere 13 percent gained access to a knowledgeable clinician.

"It can be a postcode lottery in terms of where you are and what opportunities are available to you for assessment."

Dr Jessica Eccles

Luke Grindlay, aged 23, received his HSD diagnosis during primary school after teachers noticed persistent difficulties with pens and cutlery. The unpredictable manifestations of HSD mean he frequently battles imposter syndrome, balancing days of running long distances with others where a simple shopping trip causes profound exhaustion, prompting a career shift to massage therapy for dementia patients.

Dr Eccles notes that HSD symptoms can intensify following environmental stressors such as puberty, menopause, or viral infections like Covid-19. Dr Stephanie Barrett, a consultant physician and rheumatologist, explains that while physiotherapy helps tone key stabilizing muscles, dismissing patients with a superficial directive to exercise is inadequate, calling instead for broader government and medical recognition to properly tackle the condition.

Source: BBC Health