Scleroderma & Raynaud's UK (SRUK)
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A Daughters pain

I watched my mom die from Reynolds and scleroderma ,I was 10 when she died within a year of her diagnosis she was gone her first symptom was picking me up from daycare and her fingers turning colors by the end most of her fingers were amputated I remember them telling my parents that it may have come from the marshy waters when my dad was.stationed in north Carolina that was in 1987

6 Replies

I can feel your pain. Your mother may have had the worse type of Raynaud's and Scleroderma. The cause of it is not known. Fortunately for the majority of us it is not so bad. I am 85 and have had it all my life I think. My cousin in America had a stem cell transplant a few years ago and is very well. It seems to have cured her.


That scares me because I have had Reynaud's Syndrome for years and the winters are getting so hard on my fingers and toes. It doesn't matter how many layers I put on my fingers and toes any cold instantly turns them white and very difficult to bend. My doctor said there is no need to treat this and nothing will happen due to this syndrome. My fear is the amputation because my fingers have no circulation. Do you know if your mom took medication for it? I would appreciate a response


There are treatments, see another doctor


I have had raynauds and scleroderma for 24 years. I have had no ulcers and no amputations , so do not prematurely despair, though it is understandably a worry for you. There is Nifedepine (Adalat) which is a blessing and eases symptoms a great deal. You really did ought to be referred to a rheumatologist to eliminated Scleroderma at the very least.


Scleroderma rarely appears in families although Raynaud's can. If you are concerned ask to see a rheumatologist to confirm or eliminate your problem. This can be done by a simply ANA (anti nuclear antibody) blood test.

Good luck!


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Like Zenabb I feel very sad for you. No good time to lose one's Mum but you were so very young bless you. It is strange how fast and severe the onslaught is for some with this disease and yet for many it is a slowly progressing illness. I am now in to my 23rd year with it. As I age (now 64 ) it is becoming more debilitating. I have Neuropathy now which means the balance receptors in my legs are not relaying messages to the brain. A similar symptom as in MS Sufferers. But I did at least have an active life until the various probs took hold. Your Mum must have been fairly young when it all went bad for her. It is a strange disease. Nobody really knows what triggers it.!a gene even inherited from possibly hundreds or even thousands of years ago in our ancestral past is my theory. It being so rare it eliminates many other factors and is why I very much doubt it is connected to your Father's location in Carolina. If so easily caught so many more would have the disease. I really do not think it had anything tondo with this. The simple truth is that therenisbno one definitive answer to the burning question.


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