Just to clarify a bit, the old Scleroderma FAQ was about 14 pages long and was a bit out of date. This has now evolved to a full-blown website focused on scleroderma education titled the Scleroderma Education Project and it is now located at www.SclerodermaInfo.org.
Here is what is included on the website:
- A completely updated Scleroderma FAQ, which is now about 40 pages long. It includes detailed information about the new 2013 ACR/EULAR diagnostic criteria, clinical implications of the 9 identified scleroderma antibodies, complete information on standard immunosuppressant treatments including risks and side effects, detailed treatment approaches for all scleroderma related symptoms, etc. Print versions are available in both US and A4 formats.
- Guide for New and Future Patients - this is a companion document that is focused on getting correctly diagnosed, including a discussion on problems in ANA and antibody testing, how to prepare for doctor visits, baseline and routine testing, and a note for family and friends. US and A4 print versions are available for this document as well.
There are also supplemental technical articles on ANA and antibody testing and Scleroderma Hyperviscosity. Three additional articles are under development.