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Hypermobility: The 'Bendy Disease' Causing Pain and Fatigue
🇬🇧 United Kingdom /Health & Science

Hypermobility: The 'Bendy Disease' Causing Pain and Fatigue

From BBC News · () English

Translated from English and summarized by DistantNews. Read the original for the full story.

At a glance

In-depth Named sources Context piece
  • Hypermobility Spectrum Disorder (HSD) is a connective tissue disorder causing joints to have a greater-than-normal range of motion, leading to pain and fatigue.
  • Many individuals, like Vivienne Duval, experience significant delays in diagnosis, with some waiting up to 21.7 years for a diagnosis of HSD or hypermobile Ehlers-Danlos Syndrome (hEDS).
  • The diagnostic process is complex, with limited dedicated guidelines and a "postcode lottery" for assessment, often affecting women more significantly.

Vivienne Duval, diagnosed at 58, exemplifies the long and often confusing journey many face with Hypermobility Spectrum Disorder (HSD). For years, Duval experienced a range of unexplained health issues, including digestive problems, fatigue, and pain. Her flexibility, once seemingly a harmless trait, was only recognized as the root cause after she encountered information about HSD online.

I saw myself in everything they were saying.

— Vivienne DuvalDescribing her reaction upon learning about Hypermobility Spectrum Disorder symptoms.

"I saw myself in everything they were saying," Duval stated, highlighting the common experience of individuals recognizing their symptoms in shared accounts. Her diagnosis confirmed a condition where lax collagen in connective tissues forces muscles to work harder to stabilize joints. This increased effort results in chronic pain and fatigue, and can also manifest as gastrointestinal issues due to stretchier connective tissue in the digestive system.

Research indicates that HSD and hypermobile Ehlers-Danlos Syndrome (hEDS) may affect hundreds of thousands in the UK, yet diagnosis remains a significant hurdle. Patients often wait an average of 19 to over 21 years for a diagnosis. This delay is partly attributed to the lack of a dedicated clinical guideline from the National Institute for Health and Care Excellence (NICE) for HSD diagnosis.

I had all these separate things, but no one had ever put them all together. Now it's blindingly obvious.

— Vivienne DuvalReflecting on how the HSD diagnosis unified her various health complaints.

Dr. Jessica Eccles, a researcher specializing in brain-body interactions and hypermobility, describes the diagnostic process as a "postcode lottery." Access to assessment varies greatly depending on location and available resources. Furthermore, research suggests that women are disproportionately affected by HSD and hEDS, a phenomenon Dr. Eccles links to the historical under-research of women's health issues compared to those affecting men. The study also found that fewer than a third of diagnosed individuals had their GP initiate management, and only 13% had access to a "knowledgeable clinician," leaving many feeling lost and unsupported.

We know that women's health is not necessarily as well-researched as problems affecting men.

— Dr. Jessica EcclesExplaining potential reasons for diagnostic disparities in hypermobility disorders.
About this summary

Originally published by BBC News in English. Translated, summarized, and contextualized automatically by DistantNews, with a note on how the source frames the story. Not individually reviewed before publishing. How this works.

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