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Peggy

Diffuse or Limited - Which am I?

3 posts in this topic

I feel like an idiot here but I was wondering if someone could tell me which one I am. I have systemic sclero with some lung involvement, skin involvement that is off the charts and have it on my arms, legs, chest and face; I don't have any heart involvement but I do have gastro involvement pretty bad. So do I have diffuse or limited? And according to that how much time do I have.............or do you go by you have it active for 3 years and then it goes into remission to appear again later?

 

Thanks.

 

Peggy

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It is not a dumb question. The word 'limited' refers only to the degree and location of skin involvement. This is from our medical page on Limited Scleroderma:

Systemic Sclerosis (scleroderma) is classified in terms of the degree and location of the skin involvement:Diffuse, Limited, or CREST Syndrome.

• CREST Syndrome does not necessarily have any skin tightening at all.
• Limited is limited to the hands (although the face and neck may also be involved.)
• Diffuse is when skin tightening also occurs above the wrists (or elbows, see below).
• Systemic Sclerosis sans Scleroderma is when there is internal organ fibrosis, but no skin tightening.

Given that you have truncal skin involvement, you probably have the diffuse version of systemic scleroderma.

As for your prognosis, I wouldn't worry too much about counting your days, sweetie. biggrin.gif There is no formula for determining how long any of this will last as I t varies from case to case. Gastro involvement is fairly common in scleroderma patients and can continue indefinitely. Skin hardening may level off or 'soften' after a time, but you will still need to keep an eye out for things like blood pressure which could signal kidney involvement.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Peggy, I agree with Jefa, it sounds like you have diffuse. I have had diffuse for 18 years now. When I first was sick, the doctors told my parents that I may only live 3 years. I am still alive!! Life is great!!

Sadie

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