"Everyone's a bit bendy. It's not connected to your other symptoms.", what you've probably been told
EDS / HSD
Joint hypermobility is covered in the NHS Clinical Knowledge Summary. Diagnosis of hypermobile EDS (hEDS) and Hypermobility Spectrum Disorder (HSD) follows the 2017 international classification (Beighton score plus systemic criteria) maintained by The Ehlers-Danlos Society.
The wait: Average diagnostic delay is 10+ years.
What GPs miss
Hypermobility is frequently dismissed as benign. The associated comorbidities. POTS, MCAS, GI dysmotility, chronic pain, are routinely missed because the GP doesn't connect them.
The letter asks for
- A Beighton score assessment
- Consideration of hEDS / HSD per the 2017 international criteria
- Referral to rheumatology or a hypermobility service where available
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Frequently asked questions
Is hEDS rare?
No. Hypermobile EDS and HSD together are relatively common. The NHS Clinical Knowledge Summary on joint hypermobility describes an assessment pathway any GP can follow, and the 2017 international hEDS criteria are the standard diagnostic reference.
What you hear vs. what NHS Clinical Knowledge Summary says
What's usually said in the room
"Everyone's a bit bendy. It's not connected to your other symptoms."
What the guideline actually says
Hypermobility is frequently dismissed as benign. The associated comorbidities. POTS, MCAS, GI dysmotility, chronic pain, are routinely missed because the GP doesn't connect them.
Source: NHS Clinical Knowledge Summary: Joint hypermobility (NHS Clinical Knowledge Summary)
Benefits and rights for EDS / HSD
Outcomes from people with EDS / HSD
One short email each Sunday, anonymised stories from people who got their GP to take them seriously.