[Liberty]

I am looking for a sjogrens specialist in the London or London/kent area.
(Not St Thomas` please).
It is also important that the doctor is very nice and understanding etc....and will take my minor symptoms seriously (minor - but causing me real problems when they flare).
I dont want to waste my time seeing any unhelpful/dismissive rheumatologists....but somebody who is contactable/helpful when I am feeling particularly unwell......somebody that I can see on an ongoing basis to keep an eye on things.
I dont know where to start to find such a doctor (lady doctor would be nice)...but once I know of somebody I can ask me GP whether they can refer me.....I know that you can only be referred within a certain area....but my GP is very good.
I have seen my local rheumatologist in the past but he was not helpful.
Thank you very much.
Best wishes

 

[LolaLola]

Hello Liberty, It is Dawn . I was going to ask here for you. Didn't realise you are a Member here. (Or else I had forgotten) I am sure you will get plenty of good suggestions here.
x Lola

 

[Clare.T]

Hello Liberty
I am sorry you are going through so much and have great sympathy for your feeling that doctors don't take you seriously. I had my own concerns dismissed very often over the years. I know what a tremendous difference it makes having doctors who are good people and care.

Unfortunately I have never heard of doctors specialising in Sjogren's. There is such a frequent overlap with lupus that any autoimmune connective tissue disease expert should be able to deal with it. I can only suggest the laborious investigation of googling Sjogren's and looking at the authors of all the papers to see who there is in the UK who appears to have a special interest in SS.
Maybe there is a UK Sjogren's support group or perhaps the USA one has some British members who could help out.

Maybe you could envisage going to the private London Lupus Centre. Several of their team are not at St Thomas'.
As I write I remember that Mooks posted recently about a new CTD centre in Kent I'll check it out right away and post the link.

Here is the link - the centre is in Maidstone
http://www.thelupussite.com/forum/showthread.php?t=71460

All the best and lots of luck

Clare

 

[KidsPT]

Hi Liberty,

I am diagnosed with Sjogren's syndrome, but I am sorry I am in the USA so can't help you with finding a Dr. over in London. However, there is a Sjogren's message board that I go to that is very good and I know they have members from all over, someone there might be able to give you some Dr. names. I don't know if I can post websites here, but if you are interested let me know and I will send it to you in a private message. You might already know of it as it comes up on Google searches for Sjogren's. Or if one of the moderators can let me know if it is Ok to post I will do that also.

Nancy

 

[Clare.T]

Me again
I looked up British Sjogren's Society and found this

Anybody who suffers from dry mouth or dry eyes wanting more information either for themselves or a family member or wishing to become part of the SICCA project, or indeed to be investigated for Sjögren's Syndrome, should contact Dr Beni Jacob, Sjögren's Syndrome clinic, King's College London Dental Institute, Guy's Hospital, London SE1 9RT (or by e-mail via [email protected] ). Alternatively ring on 0207 188 4374. Detailed information on SICCA can also be found on the website www.sicca.ucsf.eduww


Three years ago, the National Institute of Health in the USA funded a major international collaboration with the objective of properly defining the characteristics of primary Sjögren's Syndrome and its various sub-types. It also aims to identify diagnostic markers which can be used in the future and amass a repository of patient samples which can be used by any research group to further study into the syndrome. From the beginning of 2007, the Sjögren's Syndrome group at Guy's Hospital became the sixth international centre and the only one from the UK to be a partner in this project. The other centres are in Buenos Aires ( Argentina ), Beijing ( China ), Denmark and Japan with the University of California in San Francisco (UCSF) coordinating the alliance. It has been named the Sjögren's International Clinical Collaborative Alliance (SICCA) and the six participating groups use identical forms and methods to collect data from patients, their oral, ophthalmologic and rheumatologic examinations and collections of bio specimens, including tears, saliva, serum, DNA and salivary gland tissue. Professor Stephen Challacombe, together with Professor Gabriel Panayi, founded a multi-disciplinary Sjögren's clinic at Guy's Hospital in 1989. This clinic continues to have oral medicine, rheumatological and ophthalmological input and is the basis of the link with SICCA.

Interesting!

Clare

 

[Liberty]

Dear Clare and Nancy

Thank you both very much indeed. I am very grateful to you both. Nancy, I would be grateful for the link if you dont mind. Thank you!

Clare, thank you so much. I find that really interesting - an actual sjogrens clinic at Guys! Guys also comes under one of the hospitals that our practice would refer to anyway...

Fabulous! Thank you!

Very best wishes to you x

 

[Liberty]

Dear Lolola

THANK YOU too of course! Sorry - I replied to you elsewhere.....but thank you.

Hope you are okay

Lots of love Liberty