By Andy on Sunday, June 04, 2000 - 09:38 pm:

Okay, I need to find a doctor in the UK who has experience with EDS. I went to see a surgeon who knew 'of' the disorder, but that's all. He told me there was no lasting treatment he could do and has referred me to a rhumertologist (excuse spelling). I have this awful feeling that he's just going to refer me again, and again. Could someone PLEASE tell me a name to refer TO??? This would be so much help, not just for me, but for others in the UK. Thanx.

By Sara on Sunday, June 04, 2000 - 09:40 pm:

Hey Andy
I'm a 27 year old female with EDS and have had extensive surgery in the UK. Feel free to e-mail me and I'll give you my orthopods details. Good luck :-)))

By Gwen on Sunday, June 04, 2000 - 09:41 pm:

Andy, there is a UK website for Ehlers-Danlos, also the Hypermobility Syndrome Association has one. I can't remember the http:// offhand but put both refernces in your search engine and you should get to them. Happy hunting.

By Nicki on Sunday, June 04, 2000 - 09:43 pm:

The website addresses are
HMSA www.hmsa.freserve.co.uk

EDS http://ourworld.compuserve.com/homepages/EDS_UK/Ehlers.htm

hope this helps.
By the way, if anyone's been emailing Kathie at the HMSa she's having PC problems right now and can't get her mail till next week. Please be patient or email me (I'm the membership secretary)

Best wishes
Nick

By Kathie (Kathie) on Saturday, July 08, 2000 - 03:33 pm:

The new HMSA website address is http://www.hypermobility.org/

By Barbara on Monday, January 15, 2001 - 10:15 am:

The UK EDS Support Group web-site has moved to http://www.ehlers-danlos.org/

By vicky on Monday, February 26, 2001 - 05:08 pm:

Sorry, I am going to have a rant. I was refered to a rhuematologist because I had arthritis like pain in all my joints, and was eventually given the diagnosis of musco skeletal pain caused my joint hypermobility. The rheumatologist seemed to think this was an end to his involvement, and I will not see him till July now. The only reason I realised I was not the only person in the world like this was by finding this website, and I am pretty sure I have EDS as I have discoloured skin on my joints and I bruise really easily, and my skin splits without me even cutting myself. I finally got reffered to a physio through my GP, only for him to say that he can't treat me until he has a pathological disorder to treat, and he doesn't believe joint mobility can cause pain. AAAAAGGGGHHHHH He wouldn't evven tell me how to tape my joints. He also told me that the Doc had done all the tests at his disposal, but I have never had a biopsy so can I have been tested for eds?
As I can't afford to pay for private treatment, has anyone got any suggestions as to how I can pursuade these fools to see sense.I will print out copies of the articles on the english HMS site, but has anyone got any similar experience to share ( sorry daft question!)

By Sheena on Tuesday, February 27, 2001 - 10:55 am:

Vicky, I agree that some physiotherapists do not have experience of people with hypermobility pain. Which area of the UK are you in? I am in Berkshire. Maybe I or someone else on this board could recommend another physiotherapist for you. Also try the board on the UK Hypermobility Association website at www.hypermobility.org

By heather j on Wednesday, February 28, 2001 - 07:45 am:

vicky-i wonder if it's worth getting a diagnosis and then going back. i went to a geneticist for my biopsy- beware though-it took more than a year and i'm still having to battle for help. the thing is though now my gp has all the facts he can figure out where to send me- before he was just guessing because we didn't really know what was wrong.
also- the hypermobility syndrome association has alist of docs specialising in hypermobility- maybe you could ask to be refered to one of them, they're all over the u.k.you have the right to ask for another referral.
good luck heather j

By Lucy on Wednesday, February 28, 2001 - 08:38 am:

Vicki, I don't know where you live in England, but there are two people who can help you on the NHS. One is Professor Rodney Graham and the other is Dr. Kerry Davies - he is a consultant rheumatologist AND he knows about EDS and treatment. He does sclerotherapy as well. The trick is to TELL your GP who you want to be referred to, or you can have one private consultation with the specialist and have him write to your GP recommending a referral. If you'd like more info, please feel free to email me. Take care, keep smiling - Lucy

By Jessica on Monday, January 28, 2002 - 08:08 am:

I know your advice is a year old Lucy! But thanks anyway - it still applies. I went to the GP saying that I was still in a lot of pain, particularly with my right hip - she said - that's normal with Ligamentous Laxity - It then got worse, so I sent myself privately to see a physio who said I have misaligned my pelvis and its stuck which is what is causing all the pain - I tell my GP this and she says - it may just be that one leg is higher than the other!! If it was already - why all the pain now? And why scoff at what a physio has diagnosed? Why don't GPs listen to us - its our bodies...sorry for the rant but really! Anyway I shall take Lucy's advice and get the physio to recommend I am referred to him! Brilliant - thanks for your help - Jxx