Letter highlights struggles of undiagnosed hypermobility patients in UK
11 reported
A letter published in The Guardian describes the challenges faced by individuals with hypermobile Ehlers-Danlos syndrome (hEDS) in the UK, citing long diagnostic delays and a lack of treatment. The letter, written by a 34-year-old former drama student, details a personal decline beginning at age 19 with surgeries, followed by diagnoses of thyroid cancer and Hashimoto’s, and a Beighton score of 9/9. The writer reports that for eight years, their nervous system has been unstable, preventing reading, watching TV, or tolerating light, and at their lowest, they could not spell basic words or speak coherently. The writer states that diagnoses came from private specialists in England, not the NHS in Scotland, and that parents spent thousands on care. The letter also notes that 94.4% of hEDS patients endure psychiatric misdiagnosis before clarity, and that prevalence is estimated at one in 227 people in the UK, with 95% of sufferers undiagnosed. A second letter describes a 34-year-old daughter diagnosed after a consultant’s remark, but no treatment plan followed.
What’s reported
The writer is 34 and a former drama student whose life was dismantled by hEDS.
Decline began at 19 with surgeries; by 24, diagnosed with thyroid cancer and Hashimoto’s, with a Beighton score of 9/9.
For eight years, the writer’s nervous system was unstable, preventing reading, watching TV, or tolerating light.
At lowest point, the writer could not spell basic words or speak in coherent sentences.
Diagnoses came from private specialists in England, not the NHS in Scotland.
Parents spent thousands on care; without this, the writer might be in a wheelchair.
94.4% of hEDS patients endure psychiatric misdiagnosis before clarity.
Prevalence estimated at one in 227 people in the UK; 95% of sufferers remain undiagnosed.
hEDS carries a disability burden comparable to multiple sclerosis but receives a fraction of the funding.
90% of cases are women facing 15-year diagnostic delays; suicide-attempt rate is 17.8%.
A second letter describes a 34-year-old daughter diagnosed after a consultant’s remark, but no treatment plan followed.
Key figures
Writer of first letter (name and address supplied)
Writer of second letter (name and address supplied)
Daughter of second letter writer (age 34)
Sources: The Guardian
