Lives are being ruined by undiagnosed hypermobility and lack of treatment | Letter

The Guardian Health Sunday 21 June 2026, 15:06 UTC By Guardian Staff 1 min read

Key Points

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....

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 diagnosis

Your 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.

Ehlers (PERSON) UK (LOCATION) Hashimoto (PERSON) Beighton (PERSON)

Originally published by The Guardian Health Read original →

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Lives are being ruined by undiagnosed hypermobility and lack of treatment | Letter

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