When I originally wrote this Scleroderma FAQ in 1995, the Internet was in its infancy and there was basically no useful information about scleroderma available for patients and their families that 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 that incorporates the latest in medical research but is written in a manner that can be understood by the typical scleroderma patient so they can work with their physicians to make informed care decisions.
It is now more than 21 years later and there is a wealth of information about scleroderma available on the Internet. Unfortunately, most of it falls into two categories: it is either very basic/limited or instead it is written using medical terminology and descriptions that are almost impossible to understand fully without a medical background.
Everything in this document is based on published research unless it is clearly listed as anecdotal. Since this document is written for patient education rather than being a research document, I have chosen to include only a small number of the hundreds of research articles I reviewed in order to create this website. If anyone is interested in more specific research citations, feel free to contact me at the email address listed at the beginning of this document.
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.
It is my hope that scleroderma patients and their families will find this Scleroderma FAQ to be helpful in increasing their understanding of the disease as well as to allow them to work more effectively with their physicians. I am always open to suggestions for improving this document and welcome your feedback. You can reach me through the Contact Form on this website.