Hi,
My daughter has been assessed as having many hypermobile joints but not enough for a positive Beighton score. She's in pain a lot and especially when walking around much. I'm now looking for a really good rheumatologist, who is super friendly and patient as my daughter is autistic, anxious, has tics and is selectively mute. We're in Buckinghamshire but willing to travel for the right doctor is anyone can help?
I am afraid you might struggle to find a rheumatologist in the UK that deals with hypermobility. The British society for Rheumatology has new guidance for referral to rheumatology that says do not refer hypermobility to rheumatology, although there may be local pathways.
rheumatology.org.uk/Portals...
You haven't said what age your daughter is, but sometimes community paediatricians will see children with hypermobility, but there is scope for GPs to manage it now, with the GP tool kit:
The thing with symptomatic hypermobility is that there isn't a specific specialist that deals with it in the UK. So if there are digestion problems, that would be a gastroenterologist, for pain there are now pain specialists, and mainly for joints is physio.
As your daughter has autism (my son does too!) you might want to explore the work of Jessica Eccles as she studies EDS/HSD and neurodiversity.
youtube.com/watch?v=xs9PCFO...
And last, have you called the EDS UK helpline? They might be able t put you in touch with a local support group that could advise on the closest good medical support.
Great Ormond Street hospital have a hypermobility unit. And so does stanmore (national orthopedic hospital). So that might help. I think uclh might do but not sure if they are accepting referrals.
ME (cfs). Not hEDS
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Paedeatric consultant needed
Pudendal Nerve Entrapment/Alcock Canal Syndrome
