Ehlers Danlos III Help Please!

[PowerPants]

Hi - I was diagnosed with EDS III by Prof Grahame about four years ago. I have POTS too. MY EDS has suddenly exploded on the downside - my bowels are blocked, I have a prolapse, my retinas are tearing. I dislocate all the time and I need some help. I am under a specialist at Bath Hospital of Rheumatology but although he is excellent the team is very hit and miss and I had a disappointing meeting yesterday. My GP is as much use as a fart in a thunderstorm and the local rheumy 'doesn't believe in EDS'. I think i need to find a decent London specialist - can anyone recommend anyone? I am about two hours away but don't care - however Stanmore is the wrong side and too far. Thanks all.

I have EDS III and POTS plus fairly serious autonomous and mobility issues. In terms of rheumatologists, Stanmore is generally considered to be very good, but if that is too far then UCLH has a good rep. However, and I say this in the nicest possible way, what do you want a doctor to be able to do? EDS is broadly managed through physio and pain management. Do you get regular physio? Have you got a pain management consultant? For the dislocations, muscle strengthening and splinting would generally be the way to help, plus pacing and mobility support. Other than that, fixing the prolapse and getting your bowels unblocked would be the priority, but have you seen a gastro/gyno, for those, depending on where the prolapse is? EDS is seriously underfunded and there is actually very little that rheumatology can do. I would concentrate on management, as much as you can, plus sorting out acute issues, as and when they arise. I presume that you are aware of HMSA and www.ehlers-danlos.org/ EDS-UK]] . They can be very helpful.

Thank you for replying and an excellent question. It may be I am expecting too much! I'd like a specialist who is familiar with EDS to take a holistic view and point me to other specialists who are familiar with EDS to repair me. I have no physio since the one I had damaged me due to being unfamiliar with EDS. I would LOVE a pain consultant but the GP is being funny about it....I have found a gastro locally who seems to know EDS - but do i just go to the GP and ask for a referral? It may be that my only option is as you say, to use my GP to provide critical care and this is what people do. I just think it is a pretty poor show that is all (stamps foot). I think an EDS familiar physio would help but I cannot seem to find one. I am a member of EDS Uk but have not heard of HMSA, thank you.

if you can get to London for private physio - DDs last consultant recommended Jane Simmons at St Johns & St Elizabeths in St Johns Wood. We saw a different physio there (who did know what she was talking about), but DD didn't gel with her, and as her hypermobility causes fewer problems than her POTS, we haven't pursued any more regular physio.

Thank you myvisions. I could come once a month but no more than that. It would be wonderful to have an EDS literate physio.

My friend has EDS and sees a physio in Wimbledon (think she has been seeing him for 20 years or so). Let me know if you want his contact details :)

Thanks Nikki, will do.