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
Kevin Howell is the ISN Translator (Italian to English) for this story. He is a Clinical Scientist for Professor Black at the Royal Free Hospital in London.
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!
Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected] to request our Welcome email, or to report bad links or to update this page content.