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Biomarker for Diffuse Scleroderma skin has been discovered!


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Has anyone had a late or slow onset of diffuse skin involvement?


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#21 Amanda Thorpe

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Posted 28 February 2015 - 02:22 PM

Quiltfairy, your brother is also welcome to swap with me, today I got up at 7:30 but not a.m. actually p.m. and no, I was not just resting my eyes...I wish!

 

We tend to think a disease only serious if we can either see how it debilitates or we have been give a short time limit to live by. Well a life limiting (terminal) disease is not just cancer or something that kills us off within months or two years at most. When I saw the scleroderma expert for the first time I asked what my life expectancy was, I had no internal organ involvement but rapid, massive skin involvement, he gave me at least 10 years. I was 39 years old and should have expected to have at least 30 years at that point not just 10. I call that a life limiting illness. I call that a serious, life changing illness. I call that an illness your brother would not want in a hurry. 

 

Funny, you think people would be glad to see us not as ill as we could be, better than expected, still able to have quality of life. I may well buck the trend and exceed 10 years but I don't think whatever it is will be what it would have been pre scleroderma. No one in their right mind would want that.

 

Take care.


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#22 greypilgrim256

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Posted 01 March 2015 - 02:37 PM

How many years ago was that Amanda if you don't mind me asking? 

 

Do you happen to know what antibody type you have? 



#23 greypilgrim256

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Posted 01 March 2015 - 02:39 PM

Lizzie, there is a good chance it is the U3RNP antibody with the nuceloar pattern. It is not a commercially available antibody to test for and has to be sent to special labs. That is what I have. Only 3 antibodies produce a pure nucleolar pattern.

#24 Amanda Thorpe

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Posted 04 March 2015 - 05:06 AM

Sorry to reply late, Greypilgrim. I was diagnosed in 2007 and my ANA/SCL-70 was at diagnosis, is now and always has been negative. I am what they call atypical. My blood work shows me as being totally healthy, nothing wrong not even an abnormal rheumatoid factor!  As helpful as it would be for blood work to be 100% reliable, it often is a red herring.

 

Hope this helps and take care.


Amanda Thorpe
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#25 judyt

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Posted 09 March 2015 - 01:44 PM

Hello Grey,

 

I am talking now about your question of Limited Sclero morphing into Diffuse.   Prior to this I had never heard of this happening, but in the last 24 hours I have had a conversation on another Forum with a lady in the UK who had just that happen.

 

She says she was diagnosed with Limited and then suddenly it began to change very quickly into Diffuse.   She was crediting quick action from Prof.Denton at the Royal Free in London as saving her life.   So it would seem it can happen, but only rarely from what all of us here seem to know.

 

Sorry if that was NOT what you wanted to hear.

 

Judyt



#26 greypilgrim256

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Posted 13 March 2015 - 07:53 AM

This is a new article I found about people that are "middle of the road", I think this is probably where I fit in. 

 

Here's a link to the article "Overlap in Scleroderma" in the News Forum.