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

Vivienne Duval has always been known for her flexibility, even participating in various yoga poses. However, it was not until she turned 58 that she realized her bendiness was not a desirable trait, as it was a symptom of an unknown health condition. Recently, while browsing social media, Vivienne came across a video explaining the symptoms of Hypermobility Spectrum Disorder (HSD), which she found to be extremely relatable.

After doing her own research and consulting her doctor, it was confirmed that Vivienne had hypermobile joints. She now understands that her numerous health issues were all connected to her bendy joints, including digestive problems, fatigue, and pain.

HSD is a connective tissue disorder that causes joint hypermobility, or a greater-than-normal range of motion in joints. This laxity in collagen between connective tissues forces muscles to work harder to stabilize joints, resulting in fatigue, pain, and clumsiness. HSD can also cause gastrointestinal symptoms due to the increased elasticity of connective tissue within the digestive system.

Additionally, HSD has been linked to neurodiversities such as autism and ADHD, and there is an increased prevalence of hypermobile Ehlers-Danlos Syndrome (hEDS) among people with HSD.

Despite being a relatively common condition in the UK, many people like Vivienne face significant delays in receiving a diagnosis. New research from the University of Edinburgh found that patients with hEDS and HSD in the UK waited an average of 19 to 21.7 years for a diagnosis. The diagnostic process for HSD is complicated by the lack of a dedicated clinical guideline, leading to a "postcode lottery" in terms of where patients are diagnosed and the availability of assessment opportunities.

Furthermore, research has shown that under a third of those diagnosed received management initiation from their GP, and only 13% had access to a knowledgeable clinician.

Dr Jessica Eccles, a researcher on brain-body interactions and hypermobility, notes that diagnosis can be challenging and vary based on location. She also points out that HSD and hEDS tend to affect women more. Dr Stephanie Barrett, a consultant physician and rheumatologist, highlights the severe brain fog linked to hypermobility and the inability to work for some people.

Vivienne, who was diagnosed with HSD at 24, feels unsupported in her journey and often turns to social media for information. She is not alone in her frustration and relief upon her diagnosis, as many others share similar experiences.

Luke Grindlay, diagnosed with HSD at 23, has struggled with his condition since childhood. He often felt misunderstood due to a lack of information on HSD, leading to imposter syndrome. Luke's symptoms vary, from running long distances without pain to feeling extremely tired after simple tasks like going to the grocery store. His work in golf requires long hours of waiting, which can be painful.

Vivienne and Luke both face challenges in their social lives and work due to their condition, as HSD symptoms can worsen after a stressor or during significant life changes such as puberty, menopause, and even after the COVID-19 pandemic. Treatment options include physiotherapy and gentle exercises, but there is no single cure. Dr Eccles and Dr Barrett emphasize the need for more attention, research, and support for people with HSD and hEDS, calling for a collaborative effort and government recognition to address this "little-known bendy disease."