My sister has had scleroderma for six years. Every day her physical aspect changes. At first, I accompanied her everywhere—to Rome, Palermo, Catania, to every hospital where they said they knew about scleroderma. Now she goes to the hospital a week every month to take a very strong medicine.
I was reading a lot about this illness, but now I am really feeling helpless because I feel powerless. I see my sister getting worse from day to day. She is thirty-five and has a son who is only six years old.
Her husband is always away and busy at work, and I work too. How can we take care of her? How do we defeat this terrible, fatal enemy? Please, help me discover a medicine, which could help her live as long as possible so that she will know her son's children.
I would like someone to give me addresses of hospitals, names of new medicines, and information on any new discoveries.
My sister was the most beautiful girl in our little village in Sicily. Now her skin is like wood, her mouth so little, and I cannot look at her hands without an escape to cry. Her fingers are deformed. She is embarrassed to enter into a shop to buy something and to hand them the money.
What happened to my sister?
New email address needed
Old Email Prefix: silvana.schimmenti
Story posted 9-22-02
Story edited 7-8-04 SLE
Vol. 2 matching edits 01-20-05 SLE
Story Artist: Shelley Ensz
Story Editor: Judith Devlin
(Italiano) Cos'è la Sclerodermia
PDF Brochure: What is Scleroderma?
This story is featured in the book Voices of Scleroderma Volume 2
In Loving Memory of Lorraine Wempner, a donation to tackle scleroderma has been made by Paul Wempner. Posted 11/13/2019. (Also see: ISN News)
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