Hello, I'm writing this story on behalf of my mother, who is not very good at using a computer. Her disease was diagnosed in May 1998, but the symptoms were already present a long time before that. Her hands were affected at the very beginning, and no longer had the same elasticity and started to become white, cold and, above all, stiff in their movement.
Then the disease extended to other parts of the body, always involving the skin, with the formation of lesions and hardening of the skin. Afterwards she developed other classic manifestations of the disease including gastroesophageal reflux and widespread pain that have required a special diet as well as the use of numerous drugs like steroids.
Currently my mother is seen regularly at the Department of Rheumatology in the University Clinic in Padua. Over and above the classic symptoms of the disease, she now also has renal problems due to scleroderma. She suffers from recurrent bouts of gastric reflux, mostly at night, that cause terrible pain, and also has fever associated with breathing difficulties as well as a very intense feeling of abdominal bloating. Furthermore, there is a hardening of the skin to such an extent that taking blood is hardly possible, together with a loss of strength and general fatigue.
At this point I'll stop because maybe I can't be precise enough, but anyway in less than two years my mother's life has totally changed for the worse, really the worse. Then reading the letters published by you from other people, I found out that their symptoms and medications are the same as hers.
So if any of you would like to get in touch with her, possibly to meet, or just to talk, with the intention of improving the situation for those that find themselves having to fight this strange and awful disease, I would be happy to put you in contact. We are hopeful of finding someone with whom we can try to overcome the problems created by this disease and by its drug treatments.
Thank you for your attention. I wish all the people suffering from scleroderma to be able to manage to live in a decent manner, without having to put up with this terrible suffering and other things that the disease unfortunately brings. Best wishes - Antonio Sabino.
New email address needed 08-06-09 SLE
Old Email Prefix: gtwjgs
Story posted 7-2-00
Story edited 3-28-02
Story translation by Kevin Howell posted 6-18-02
Story Artist: Shelley Ensz
(Italiano) Gianna: Sclerodermia sistemica progressiva
(Italiano) Sclerodermia dalla A alla Z
Hardening of the Skin
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.