Diffuse or Limited - Which am I?
Posted 03 May 2008 - 04:38 AM
Posted 03 May 2008 - 05:22 AM
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.
â€¢ CREST Syndrome does not necessarily have any skin tightening at all.
â€¢ Limited is limited to the hands (although the face and neck may also be involved.)
â€¢ Diffuse is when skin tightening also occurs above the wrists (or elbows, see below).
â€¢ 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. 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.
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International Scleroderma Network (ISN)
Posted 03 May 2008 - 05:44 AM
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!!