Scleroderma.. What exactly is it?

A few years ago the doctor told me i had scleroderma, just some sort of skin disease. But I've been reading more about it just recently and what I've read sounds like its really serious. I've only got a patch on my leg But I'm now worried it might get worse? Can anyone explain to me what happens with it? I'm not even sure what to ask about it

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  • Depends what sort of Scleroderma you have? If you have Morphea which it sounds like you have, you wont have any internal organ involvement. If you have Diffuse it can be very serious, or limited can be fairly serious. Its not just a skin disease with Diffuse or limited thats only a part of it, Morphea affects the skin only. I have limited and i,m heading into what may be trouble with lung involvement, but i dont have much skin involvement other than calcinosis and raynauds, some thickening on my fingers. It affects people differently.

  • Hi inkedup. I am so pleased to read that you don't have much skin involvement, as I don't either and was beginning to feel a fraud, even though I have, like you, a bit of calcinocis, raynauds and thickening on my fingers. I agree that xfmsw should revisit her doctor for clarification, and if he doesn't understand it then to see a rheumatologist or a dermatologist. It was a dermatologist who diagnosed my limited scleroderma. Do you get tired very quickly? I do, and because I don't "look ill", I feel people think I am a lazy so-and-so as no-one has ever heard of Scleroderma.

  • Thank you Rosemerry - and everyone else for that matter. I don't come onto the site often but I always feel better when I have because I read words like yours above, especially from "Do you get tired very quickly?" onwards: it reminds me that I'm not the only one, that there are others out there going through the same thing ... thinking that people think you're a fraud. Actually I think my boss really does think that. Despite the fact that I've had a letter from my consultant giving strong support for my request to reduce my working hours, when I was particularly unwell the other week he said I must have what he'd had (vertigo)- of course it wasn't. It also took 3 months from him getting my consultant's letter to geting my reduced hours sorted, AND I had to keep chasing him up, and find out what needed to be done. I even had to write the letter from him to me (for him to sign of course) that has now gone to HR to form part of my contract. I felt (and still feel to a certain extent) that he just does not care and certainly does not think that I am really very ill at all!!!

  • Contact the Raynaud's and Scleroderma Association. They have leaflets about it. But also ask your doctor, you have the right. I agree with what inkedup has written. Make sure of what you have got and if necessary ask to see a rheumatologist.

  • Ditto all of the above. Consultants are so afraid of getting it wrong that they're reluctant to give out information, but the very least they could do would be to explain what they think their findings are.It does sound as though you have the morphea type. Mine is exactly like inkedup above. There are leaflets available at your hospitals rheumatology department too. x

  • Hi xfmsw. The Raynaud's & Scleroderma Association can explain the different types of scleroderma to you - you can contact us on 01270 872776 or by emailing info@raynauds.org.uk. As well as lending an ear we can send you some free information leaflets to help you understand. Very best, Hannah

  • Thank you everyone. I must sound silly now - yes I do vaguely remember them saying something about Morphea. I'm guessing they said that's what it was but didn't explain it very well because my understanding was that it was either/or. Not that its a type of Scleroderma. But now that there are other types, I will read more on it. Thank you very much guys, hopefully you all see this, and all the best to you who have this condition x

  • xfmsw, you're not silly at all, its very confusing!! Rosemerry, yes i do get very tired, not helped that i have multiple autoimmune conditions. Glad the skin thickening isnt too bad. Scleroderma isnt homogenous, in other words it affects everyone differently! X

  • A rheumatologist is your best bet. If you have a good one they will explain everything to you. You need to do your own research as well. Just remember that there is never a dump question. Don't be afraid to ask question; you have the right to known what is happen to your body. Get involved with a Scleroderma support group if you can as, they can help answer questions you have or don't understand.

    Each of us have a different type of Scleroderma alone with different effects. We all can in one way or another help each other when, a question arises so, feel free to ask away. I know a year ago when I found out that, I had Limited Scleroderma I was scared to death. I'd never heard of it or did I know where it came from. I must of had as many questions as, I did doctors. I still have questions here and there but, my rheumotologist has been my best friend and answers most of what I need to know. I research on a regular base and write down things to ask, when I see him.

    Have a great day and a better tomorrow, CharleneakaCharlie

  • Sounds very familiar! Yes...there are things can help you with lung involvement, and be sure to get plenty of rest when you get fatigued...don't overdo, if you can help it...it takes me 2 or 3 days to get back to my new "normal" when I get too fatigued! I have an amazing rheumatologist, who is so understanding, that helps a lot ... find a specialist with a "bedside" manner that you can benefit from .... it is so important for your overall health! Best wishes ... it's been 6 years since I was diagnosed... Dr. Don Colbert, Nutritional M.D. in Florida, helped me with fatigue and other things .... you can google his practice and find out a lot of info there, regarding nutrition and how helpful it is for dis-eases .... :)

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