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Different types of scleroderma


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#1 mydaddy

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Posted 21 April 2011 - 09:48 PM

Hi again to all,

I have a question, what type of scleroderma is the most diagnosed...... I read about the different types but don't know what the different types of scleroderma really mean.

#2 Amanda Thorpe

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Posted 22 April 2011 - 02:58 AM

Hello Lydia

There are two main subsets of scleroderma, localised and systemic with localised involving the skin and sometimes underlying tissue with systemic involving the skin and the internal organs. The different types of localised are morphea and linear and the different types of systemic are diffuse, limited/CREST and sine. Diffuse is fast moving, limited/CREST can progress much slower and sine is scleroderma without skin involvement.

Have a look at the different types for more information.

Take care and keep posting.
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#3 Joelf

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Posted 22 April 2011 - 07:37 AM

Hi Lydia,

Scleroderma is a very complex disease; no wonder you're finding the different types confusing. One of the bizarre features of it is that it affects almost all sufferers in different ways and this is what makes it such a nightmare to get a diagnosis.

Here's another link to two types of Systemic Scleroderma, Limited and Diffuse. I have Limited Sclero which has primarily affected my lungs; I'm extremely fortunate in that I don't (as yet!) have the gastrointestinal involvement which I'm afraid does seem to have affected a great many of our members (and possibly your husband too.)

Hopefully when you get the results of your husband's tests you will be nearer to getting a diagnosis for him.

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#4 Jeannie McClelland

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Posted 22 April 2011 - 07:39 AM

Hi Lydia,

I have the systemic sclerosis sine scleroderma type. It's fairly uncommon even in scleroderma, which itself is quite rare. We 'sine' types are lumped under 'diffuse' in terms of probability of organ involvement and general prognosis. (Of course we know that prognosis is a very inexact science. :) ) We can have some skin involvement: xerosis (dry skin), teleangectasia, microstoma (small mouth), actually almost everything except the skin hardening. And an even fewer number of us can develop a bit of that. I think you'll also find quite a number of us who may have some of the letters of CREST (calcinosis, Raynauds, Esophageal issues, Sclerodactyly - typical scleroderma hands, and Teleangectasia) but not all. Then some doctors in some parts of the world still call the Limited form by CREST and some don't. Then there is the question of how much skin involvement does one have to have before it is classed as diffuse? It gets very confusing. :emoticon-dont-know:

I'm guessing you asked this question in order to help figure out which form your husband may have and what his likely prognosis will be. I know when I was diagnosed, since there was so little information about 'sine' as a separate type back then (nearly 5 years ago), I drove myself crazy trying to figure out whether I was 'limited' because of not having hardening of the skin, or 'diffuse' because of the amount of organ involvement I had. I even wrote poor Shelley a fairly sarky email complaining about the lack of information about 'sine'! :lol: Don't get too hung up reading about the various types and prognoses and what-not, honey, you'll only worry yourself unnecessarily. Easy to say, but hard to do, I know. With scleroderma, we're faced daily with trying to know the unknowable. Sigh~ Doesn't work. Might as well just relax and enjoy living. That does work!

Best wishes,
Jeannie McClelland
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#5 mydaddy

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Posted 22 April 2011 - 06:13 PM

Yes ladies, very confusing but thanks to you all I have a better understanding now, so thank you so much.

I'm crying because everything everyone has said to me since I came to this board has really helped me a lot.

Thank you all for all the support.... and I wish everyone well.