I am glad it went reasonably well. I was thinking of you.
The team at UCH have had some training and I am guessing that there was a little bit of confusion because you are right in all that you have said. HMS and EDS-H is deemed to be the same but I am guessing it may be that the rheumatologist you saw may not believe that. I am not sure if Prof G is clinical lead but I have been told that he (and Dr KazKaz) are triaging referrals and any complex cases are being referred back for his and Dr KazKaz's consideration.
Gastrointestinal disorders are beyond a doubt in my opinion linked to HMS/HEDS but 'officially' some research needs to be conducted to prove it scientifically. I believe that this may happen within the next few years....research and results always take too long in my opinion but it has to be done properly so as to become 'officially recognised as an issue within HMS/HEDS' .However by sending you to Prof Aziz that will go in your favour.
Sheppey, dont worry about your DLA claim and the semantics used because with all the separate referrals you have they will stand you in good stead.
Could you let me know who the Dr you saw was via PM because I am meeting UCH in a couple of weeks and it is always nice to have an understanding of professionals beliefs!
As always I am happy to send the template letter explaining the ins and outs to the DLA folk!
I cant remember who said that they were told they had HEDS but in their report it said 'equivalent to' but this is a standard part of the report (or template) so we all tend to get that. Dont worry it will still be seen as HEDS if you prefer to refer to it as so. I usually get asked what my preference is for myself and my kids.
HMSA SENIOR MEDICAL LIAISON OFFICER/ ADMINISTRATOR
Retired RMN, HEDS, Fibro,
eldest son, HEDS, dyspraxia, IBS, ADHD, ASD
middle son, HEDS,
youngest daughter HEDS, dyslexia