I have never heard of that but it looks and sounds awful! It is a autoimmune disease, I know that. I have one form of Sclerosis, maybe 2, that is how I know it is autoimmune.

Yahoo has a group for just about everything and it typed it in to their group list.. Go here and ready away.. It even has a section for family and friends.
http://groups.yahoo.com/search?query=Scleroderma+

I have learned a lot on the yahoo groups on things health wise to pet wise... These groups are just ordinary people like us and we all share one common interest and they are (can be) very helpful!