When I originally wrote this Scleroderma FAQ in 1995, the Internet was in its infancy and there was no useful online information about systemic scleroderma available for patients who wanted to learn more about their disease than they could in a typical brief doctor visit. From the very beginning, the goal of this document has been to provide detailed, unbiased information about scleroderma diagnosis and treatment that incorporates the latest in medical research but is also written in a manner that can be understood by scleroderma patients so they can work with their clinicians to make better informed care decisions.
It is important to understand that research in scleroderma diagnosis and treatment is ongoing and thus, information changes rapidly. Unfortunately, as is the case in all medical research, many preliminary and pilot studies that look promising (and are sometimes reported in the press as the next major advance in treatment) turn out to be ineffective or to have major side effects when carefully controlled follow-up studies are done.
I am always open to suggestions for improving this document and welcome your feedback.
Edward S. Harris, MS
Honorary Asociate (Rheumatology)
Dept. of Medicine
University of Wisconsin, Madison