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

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.

I have spent my life seeking answers. My diagnoses came from private specialists in England, not the NHS in Scotland. My parents have spent thousands on my care. Without this financial lifeline, it’s possible I would be in a wheelchair. This raises a brutal question: what becomes of those with nothing? Despite clear evidence, the NHS never suggested testing for comorbidities like postural orthostatic tachycardia syndrome (POTS) or mast cell activation syndrome (MCAS). This is the norm: 94.4% of hEDS patients endure psychiatric misdiagnosis before clarity.

We are seeing only the tip of the iceberg. With prevalence estimated at one in 227 people in the UK and 95% of sufferers remaining undiagnosed, we face a hidden crisis of unprecedented scale. Research shows that hEDS carries a disability burden comparable to multiple sclerosis, yet it receives a fraction of the funding. With 90% of cases being women facing 15-year diagnostic delays and an 17.8% suicide-attempt rate, we need an urgent formal review and immediate investment in dedicated research. Without action, how many more lives will be ruined?
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With respect to your article highlighting that UK hypermobility sufferers wait on average 21 years for a diagnosis, my daughter was diagnosed within 15 years, but not before we’d made securing a diagnosis a full-time job for ourselves.

We were a constant presence at the doctor’s surgery and the local hospital. Then a consultant happened to remark, almost as a footnote, that it might be hEDS. But what has happened since? Nothing. My daughter is in constant pain, trying to manage her condition with exercise, diet, supplements and with prolonged periods of rest. She is 34 and her life is often at a standstill. A diagnosis is very helpful, but not when it isn’t accompanied by a treatment plan.
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