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Lives are being ruined by undiagnosed hypermobility and lack of treatment | Letter
Дата публикации: 21-06-2026 15:06:40

Ignorance around hypermobile Ehlers-Danlos syndrome is a public health catastrophe, say readers in response to an article on how sufferers have to wait 21 years for a diagnosisYour coverage of hypermobile Ehlers-Danlos syndrome (hEDS) is a vital start to addressing a systemic public health catastrophe (UK hypermobility sufferers wait up to 21 years for diagnosis, study suggests, 15 June). I am 34 and a former drama student who is unable to build any career as hEDS dismantled my life. The condition has made friendships and relationships very difficult.My decline began at 19 with surgeries; by 24, I was diagnosed with thyroid cancer and Hashimoto’s, and had a Beighton score, which is used to assess hypermobility, of 9/9. My life has been defined by chronic pain and fatigue. For eight years, my nervous system has been so unstable that I have frequently been unable to read, watch TV or tolerate light. At my lowest, I could not spell basic words or speak in coherent sentences. Continue reading...

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