Seeking info for Mum suffering with Raynaud's and Scleroderma

Hi Everyone,

My mum who lives in South Africa has Scleroderma and from reading about Raynaud's it seems she has that too, although she hasn't actually been diagnosed with it.

She is visiting me in the UK in July. We are planning on attending the Scleroderma Society's Annual meeting in London on the 19th July so she can meet other people with it and have a chat.

I was also hoping to take her to see a local doctor/specialist who can have a another look at her. She is not aware of whether she has localised or systematic scleroderma and was not even aware of the differences.

Can somebody suggest a doctor/specialist I can contact for an appointment or if this is even possible. Or aware of any other events going on between 5/07 and 3/08 which we can attend to meet people with the condition and also get more information??

Thank you all for listening and your help. Being so far away from her, I am hoping I can make a difference to her life by arming her with knowledge.

Cheers :)

Last edited by

6 Replies

oldestnewest
  • I can wholeheartedly recommend my consultant Dr Joel David in Oxford, Summertown.

    Best of Luck.

  • Hi So sorry to hear about you mum. It must be more difficult when she is far away but great that she will be in the UK with you for a whole month. I'm going to the Scleroderma Society Conference & will try to look out for you.

    There is a conference in Bath on the 3rd July but that's just a bit too early. One of the specialists from the Bath hospital is a speaker at the conference on the 19th & he should be good.

    The centre of excellence for scleroderma in the UK is the Royal Free Hospital in Hampstead though the numbers of specialists round the country is growing. It depends where you live. Prof. Chris Denton is the top man at the Royal Free. The Conference on the 19th takes place there & Prof. Denton will be around. He usually leads the Q&A session.

    If you would like info before the 19th, send an email to amybarrick@sclerodermasociety.co.uk & ask her to send you the blue booklet "Understanding & Managing Scleroderma." Just remember that it is a very general overview of the whole disease & no two patients are alike. Loads of symptoms are mentioned which your mum will not experience.

    Don't forget the Helpline 0800 311 2756

    There is an organisation called The Arthritis Foundation of South Africa. I don't know anything about it but it does mention scleroderma as a linked disease.

    Hope to see you in July!

  • Hi Lizat, Thank you for your reply.

    I am also going for the conference in Bath on the 3rd. Its a pity she is arriving a few days later :(

    I am based in Gloucestershire, but I am more than willing to drive. It would be nice to "know" somebody when I go to these events. Can we swap details??

    I've emailed Amy for the blue booklet you mentioned. Thank You.

    I will try and contact the helpline as well.

    My mum has Raynauds, as she has mentioned the blue fingers, etc. Here skin tone has changed and she looks very different on skype. She also has very very itchy skin elbow to fingers at the moment and is finding it hard to find a cream or something to help with that. She does also have pin-prick size sores which develop on her legs and it takes forever to heal. She said the pain from these tiny sores are worse than child-birth sometimes! :(

    I have a sneaky suspicion she has the worst type of scleroderma and if this is the case, she has not mentioned regular organ tests which should be done, (i think) or it could be that it is and she hasn't told me as I worry about her!

    Thank you once again.

  • Hi Doctor Chris Denton at the Royal Free Hospital in London is the best specialised scleroderma Doctor. I travel from Tamworth to see his team. He will be at the Scleroderma annual meeting. I don't know how easy it will be to get an appointment though. Your Mum should see a specialist in South Africa if she can and determine what type she has. I have systemic scleroderma with lung involvement and see Dr Renzoni at the Royal Brompton for that.

    You can contact the scleroderma society and the raynauds and scleroderma association, both produce useful newsletters.

    Hope tis helps. Enjoy her visit.

  • Hi. Did you get my private message? Hope you are still able to go to Bath. There may be some samples of useful skin creams there. Hopefully there will be a few specialist nurses around too. Itching is quite a common problem with scleroderma during some stages but it can improve after a while.

    Keep in touch. Liz

  • Hiya Liz, Yes I'll see you at Bath. I sent you an email from my email address. :)

You may also like...