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aitch46

how do I find expert

4 posts in this topic

hi

i have recently been diagnosed with 'crest syndrome'

i have what the dermatologist called a 'full house' of symptoms of C-R-E=S-T

my general practitioner readily admits she knows little of this disease

i have been referred to a rheumatologist at hull royal infirmary

can anyone direct me to a proffesional in my area

many thanks

jan :happy-day:

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Hi Jan, I was diagnosed with systemic sclerosis four years ago. Throughout that time I have been seen by an "ordinary" rheumatologist who has treated my disease very competently.You may find that your local rheumatologist will know a lot about this disease. If you are not happy with him/ her I think your nearest specialist scleroderma centre is at Chapel Allerton hospital in Leeds (Professor Emery).

 

Lizzie

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Hi Jan

 

I live in Hull, East Yorkshire and I attend the Hull Royal imfirmary and am under the care of a Dr Baguley. She's very good and seems to have helped me and is knowledgable about CREST which I to suffer from.

 

You are welcome to send me a personal message.

 

Lynn :happy1-by-lisa-volz:

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Hello Jan

 

Welcome to the forum! Here's a link to the Scleroderma Society's list of UK scleroderma experts for you. The list includes various specialties so you'll want to pick out just the rheumatologists. The Royal Free in London is a centre of excellence for scleroderma, I am a happy patient there myself!

 

We have information on site about CREST, also know here in the UK as limited scleroderma, that you might find helpful.

 

The UK Scleroderma Society has local contacts that arrange get togethers in their areas for people with scleroderma, if you're interested have a look at our local contacts. You don't have to be a member of the Scleroderma Society to join a local group.

 

Take care and keep posting.


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