can anyone help me understand about scleroderma?

hey my nan died of scleroderma I don't know much about it but I wondered if it can run through the family I'm to scared to look on line but every time I get ill I freak I'm 17 and had to watch go through it till the end. my finger keep going nearly black and when I went to the doctors he said it was nothing to worry about can anyone help me ?

7 Replies

  • i am 16 years old and i have schleroderma, your fingers dont go black so im sure your fine, sorry to hear about your nan but for all the information i have got on this it cannot be passed through the family.

  • The newer information is that certain heritages such as Native American have shown families with members with this disease. There are organizations that say otherwise, but you won't find any specific site that confirms nor denys this. You fingers going black mean you do not have enough circulation running through to your fingertips. You need to keep your hands very warm, & massage lotion through your arms down to your fingertips to keep the circulation moving. There is something definetlly wrong if you are seeing black fingers! Your Doctor if he/she isn't an autoimmune specialist doesn't have the right knowledge to treat you properly! Rheumotologists are usually booked and hard to get into see, but you can go by way of the emergance room and be sure to take all the information you have looked up on your symptoms and condition with you. If you show you have done your research (homework) they will not dismiss you. Demand to speak to a Rheumotologist who specializes in autoimmune disorders! Even if you need to be admmitted into the hospital (for your black fingertips), then you will be able to see a Specialized Rheumotologist!

  • If your hands are going black, then I would have your parents talk to your GP, if you are underage, to see about you getting referred to a Rheumatologist to check to see if you have Raynaud;s. The GP may take it from them more seriously. Also one does not necessarily lead to the other, so if you do have Raynaud's it does not mean you have or will get Scleroderma.

    Scleroderma doesn't necessarily kill anyone, it is the affects that cause the issues. So do not panic, even if you do develop Scleroderma it is not a death sentance and you will lead a long life Im sure 8) .

    You can get a lot of information from the main site here, and can call them and they will help you understand it better. Don't take what you read on the internet as gospel as it can be very scary to read about Scleroderma, believe me I scared myself to death when I first started researching it once I had a diagnosis. But through talking with my specialist and this site and being able to talk to people with the same issues has helped alot. I have met people that have had Scleroderma for over 50 years and are still going strong.

    You should always keep your hands warm if you think you may have Raynaud's, preventing attacks is the best thing you can do. So see about getting some light gloves to wear, and keep your body as warm as you can as well. I hope you get some answers and don't worry about it to much.

  • Yes, it can be inherited;

    Scleroderma can happen to anyone at any time in any geographical area. However, the disease affects women more often than men and most commonly occurs between the ages of 30 and 50. Scleroderma can run in families, but in most cases it occurs without any known family tendency for the disease

  • First of all don't be scared of scleroderma. I am 83 and I have had all my life. Get to know all you can about it. The sooner it is treated the sooner it is kept under some control. Best wishes.

  • so there is a cure for it or something that can make it better

  • There isn't a cure yet. There is a need for much more research for that. It needs a lot of money to enable it. The Renaud's and Scleroderma Association is trying to raise a cool million pounds but it is hard. But there is a lot that can be done to keep it under some control.

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