Hypermobility: The 'bendy disease' causing pain and fatigue

Hypermobility is a rarely discussed condition, often dubbed the 'bendy disease,' which is a source of discomfort and exhaustion for those affected.

Ella Kipling, a young woman with long, dark hair, is pictured smiling into the camera. She stands wearing a lengthy white dress adorned with black polka dots, positioned in front of a sizable park featuring historic buildings in the background.

Vivienne Duval possessed exceptional flexibility throughout her life, capable of performing every yoga pose; however, it wasn't until she reached the age of 58 that she recognized this characteristic was actually detrimental.

Indeed, this discovery provided the explanation for numerous unusual health complaints she had endured over many years, including problems with digestion, persistent tiredness, and chronic pain.

Earlier this year, Vivienne experienced a profound moment of clarity when she encountered a social media video detailing the symptoms of Hypermobility Spectrum Disorder.

She recounted that she identified with every aspect described in the video, prompting her to gather all available information before consulting her doctor.

Vivienne's suspicions were confirmed: she had hypermobile joints. She explained that she had always experienced these disparate symptoms, but no one had ever connected them; now, she found the cause to be remarkably clear.

While this disorder potentially impacts hundreds of thousands across the UK, many individuals, including Vivienne, face considerable delays in receiving a diagnosis.

Vivienne Duval received her diagnosis at 58 years old, following decades of uncertainty about her bodily symptoms.

Hypermobility Spectrum Disorders (HSD) are classified as connective tissue disorders characterized by joint hypermobility, meaning joints possess an unusually wide range of motion.

Due to the laxity of collagen within connective tissues, muscles must exert more effort to stabilize joints, resulting in fatigue, pain, and a tendency towards clumsiness.

HSD can also manifest as gastrointestinal symptoms because the connective tissue in the digestive system exhibits increased elasticity.

Connections have also been identified between HSD and neurodevelopmental conditions such as autism and ADHD.

Some individuals, such as Vivienne, also have hypermobile Ehlers-Danlos Syndrome (hEDS), which is identified by evaluating hypermobility and defective connective tissue throughout the body, alongside musculoskeletal issues like dislocations.

New research from the University of Edinburgh indicates that hypermobility disorders might affect hundreds of thousands of individuals in the UK, although many remain undiagnosed.

The study revealed that patients in the UK with hEDS and HSD typically experienced a diagnostic delay averaging between 19 and 21.7 years.

The diagnostic process for HSD is complicated because the National Institute for Health and Care Excellence has not issued a dedicated, separate clinical guideline for its diagnosis.

Dr. Jessica Eccles, a researcher specializing in brain-body interactions and hypermobility, remarked that obtaining a diagnosis can resemble a 'postcode lottery,' varying significantly based on an individual's location and the assessment opportunities available to them.