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(English) Valeria: Systemic Sclerosis

(Italiano) Valeria: Sclerosis sistemica

I am a twenty-one-year-old woman and at the age of nine, I was diagnosed with systemic sclerosis. From then I have been treated at the A. Gemelli Hospital in Rome.

I need to be admitted once or twice per year to have all the routine tests and undergo various treatments, including medications and various creams.

At the moment, my situation is as follows: loss of the elasticity of the skin of my face, hands and forearms; reduced esophageal motility; gastroesophageal reflux; chronic gastritis; and greatly impaired circulation in my fingers and toes

In April 1999, I started treatment with intravenous vasodilators at intervals of three months, so for every two months that I am at home, I spend about a month in the hospital. I do not want to try to explain how much this disease has cost me in terms of physical and psychological suffering and I cannot find suitable words to describe how it has altered my life.

I would like to find out about all the possible treatments for this disease, all the centers that are interested in it (in Italy and abroad) as well as all the tests necessary to ascertain the damage the disease could cause. I would also like to know if any center exists (perhaps not too far from Rome) where I could get adequate physiotherapy for my face and hands, given that I even find it tiring to roll up spaghetti and I cannot even manage to laugh because I get immediate cramps in my cheeks.

I would also like to say that my friends have played a fundamental role on this journey of mine in that they have never allowed me to feel alone for even a moment. Without their presence and support, I would never have been able to overcome the humiliation and suffering of my recent admissions to hospital.

To all the people with my disease, I would like to say one thing: Don't let scleroderma wear out your heart as it does your body. A sincere thanks to all of you for the help that you are giving to me.

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This Story is Featured in Voices of Scleroderma Volume 1

The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

ISN Translator: Kevin Howell

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.

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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