My sister recently saw a rheumatologist at Pennsylvania Hospital in Philadelphia. She had been diagnosed with fibromyalgia, and was looking for a second opinion, although she has been suffering with this for years. The Dr. affirmed the fibro, and also diagnosed scleroderma. He did not give her any info or indication of the seriousness of this disease. I have been researching and am alarmed at the casual attitude with which this diagnosis was given. He prescribed aerobic excersize, and wanted an MRI of her legs, which is where the most severe symptoms are presenting: muscle wasting, major differentiation in size and shape of legs. My main question to you is this: Who is the foremost expert on this condition in the US? Next, are there any drug or other treatment trials going on in the Philadelphia area that you know of? And finally, what are the questions one ought to be asking their rhematologist when diagnosed with scleroderma?
There is a Scleroderma Center at the Thomas Jefferson University Hospital, 111 South 11th Street, Philadelphia, PA 19107, (215)955-6000. Dr. Fred Wigley runs the Scleroderma Center (410)550-2400 x2 here at Johns Hopkins University. Additionally, the Scleroderma Foundation would also be a great resource (http://www.scleroderma.org/).
Also, on this website is an in-depth, although quite technical, webcast on scleroderma. (http://www.hopkins-arthritis.org/course/102204/agenda.html)
Scleroderma can be very serious and life threatening and the casual diagnosis your sister received needs to be followed up with a second opinion!