"Everyone's a bit bendy. It's not connected to your other symptoms."— what you've probably been told
EDS / HSD
Hypermobile EDS and Hypermobility Spectrum Disorder are recognised in the NICE Clinical Knowledge Summaries. Diagnosis follows the 2017 international classification (Beighton score plus systemic criteria).
The wait: Average diagnostic delay is 10+ years.
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.
- A Beighton score assessment
- Consideration of hEDS / HSD per the 2017 international criteria
- Referral to rheumatology or a hypermobility service where available
Is hEDS rare?
No. Hypermobile EDS and HSD together are relatively common. The NICE CKS describes the assessment pathway any GP can follow.
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: NICE Clinical Knowledge Summary: Joint hypermobility (NICE CKS)
Outcomes from people with EDS / HSD
One short email each Sunday — anonymised stories from people who got their GP to take them seriously.