Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.


how do I find expert

  • Please log in to reply
3 replies to this topic

#1 aitch46



  • Members
  • Pip
  • 1 posts

Posted 18 September 2010 - 07:38 PM

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:

#2 lizzie


    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 497 posts
  • Location: UK

Posted 19 September 2010 - 03:37 AM

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).


#3 Lynnie


    Silver Member

  • Members
  • PipPipPipPip
  • 172 posts

Posted 19 September 2010 - 12:56 PM

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:

#4 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,925 posts
  • Location:U.K.

Posted 22 September 2010 - 08:17 AM

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.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)