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
Written by
MumIsSick
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hi, i am from us and i do have scleradoma crest. i have tumous calification. so sorry to hear your mom has this. god i do know the pain she goes through. i take pain meds and they hardly do anything. i go to johns hopkins sd center in baltimore md. they study sd, but they always tell me there is no cure and they just give me meds. does your mom have calification. i have lumps in hands, legs everywhere. i had surgery on hands. the synmatic i think your have lungs problems, where does she have pain at. mind is all over. i cant sleep much, i have such leg pain. this is a alwful desease, suffer alot. sometimes i pray god please take me home, this is no life. i loss my daughter who was 40, she had cancer, its been 5 yrs. i still cry alot , i miss her so much. i have never been to england or no where out of us. we have some good hospitals but our insurance is changeing thanks to our president who has mess up everything. our insurance cost alot, and people with desease cant get much help. well love to talk, hope and pray you can find help. all they do is give strong meds in us. they say no cure. i just trust in god each day to help me through. god bless i will pray for you, thanks belle
I think it would be agood idea to speak to your own GP. He will be able to give you more information about your mums condition as we are all different and put you in contact with a Rheumatologist in your area. If you do it now then you will at least be prepared when she visits. Good luck and enjoy her visit.
I would suggest that you get a referral for your Mum to Prof Chris Denton at the Royal Free Hospital. There is a big difference between localised and systemic scleroderma. If you wish to discuss call the Helpline on 07530 810 964.
I will try and contact the helpline as well. And also heard about Prof Denton. I will try and get an appointment with him. I worry that this might not be possible as she is not actually registered with a GP locally, but I am willing to pay to go see him, not expecting it to be on the NHS or anything. Can I just contact his offices and ask for an appointment??
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 (systematic) 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! So I would like to find out for sure which one she has.
Sorry to hear your mum is having some Raynaud's related problems. Why not speak with your GP receptionist and find out if mum could be registered with your practice temporarily if possible. You could see a doctor privately but I wonder if your mum would need a referral from her own doctor.
I have heard of Prof Chris Denton. You could give his secretary a call at the Royal Free and ask how you would go about making an appointment to see him.
Raynaud's and Scleroderma can be complex and not easy to diagnose without having tests done which can take time. It took years for mine to be diagnosed
You could also contact the RSA and tell them about your mum and ask for their advice. I have found the RSA to be a wonderful organisation and I am sure you will receive the advice you require.
It is obvious you are worried about your mum and she is a lucky lady to have a loving daughter as yourself. With your help she will soon find out what the problem is and get the treatment she needs.
All the best to you both. Keep in touch with this forum as I would like to know how things are going with you both.
Thank you for the advice, I will keep in touch. It is such a varying illness and being so far away my knowledge of her everyday symptoms are a bit limited...but we shall see
Before mum comes get some booklets from the RSA. They are comprehensive and has lots of contacts details to pass on. All will improve with the right help so try not to stress over it, hopefully the weather will be much warmer when your mum arrives.
I suggest that you contact the Raynaud's & Scleroderma Association. Also ring the hospital that is recommended to you and ask to speak to the secretary of the Rheumatologist. Explain the urgency. All the best.
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