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

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

Summary

Hypermobility Spectrum Disorder (HSD) is a condition where joints move more than usual due to loose connective tissues, causing pain, fatigue, and other symptoms. Many people with HSD wait many years to get a diagnosis, and there is limited clinical guidance and specialist support available.

Key Facts

  • HSD causes joints to bend beyond the normal range because of weak connective tissue.
  • Symptoms include joint pain, fatigue, digestive problems, and clumsiness.
  • HSD and related conditions like hypermobile Ehlers-Danlos Syndrome (hEDS) affect connective tissues throughout the body.
  • People with HSD often wait around 19 to 22 years before receiving a diagnosis in the UK.
  • Women appear to be more affected by HSD and hEDS than men.
  • The UK’s health system lacks specific guidelines to diagnose HSD clearly.
  • Very few patients have GPs who actively manage the disorder or access to expert doctors.
  • Many diagnosed individuals learn about managing the condition through social media and community resources.
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