Hi! My name is Giovanna Petrachi, and I am from Italy. This story is posted in La Sclerodermia dalla A alla Z (Italian version) and Gianalberto Passoni has translated it into English. I am writing to share a problem: my sister (she is 35 years old) has had Scleroderma for many years (over ten years now.)
I think that isn't a serious Sclerodema, or it was not 10 years ago. I do not remember the exact type of SD which had been diagnosed. Up to now does not affect the internal organs. The nails are more white and the fingernails are split.
The first spot of brown color appeared on the stomach, now it is diffuse everywhere. After I had read this site, I think that my sister has a Morphea, since she has the same symptoms and the photos of Morphea I think are like her.
Unfortunately she isn' t improving after all these years (they say Morphea often goes away on its own in a few years), on the contrary the spots now are diffuse in all the body.
About ten years ago the doctors said that there were no medical treatments for this disease and she is resigned to that. So she lives with her scleroderma but she has never had any treatments for it.
I ask you if the type of SD (Morphea) is right (I can check her medical records) and which treatmens today she can do (if any treatments exists)? I hope to hear from you, whether your answer is positive or negative.
In any case I thank you and all of your medical and tecnical staff who have built this web site. In this web site I have found a lot of very interesting information.
Story posted 5-1-99
Storia: Giovanna Petrachi (Italiano)
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.