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Gioia: Systemic Progressive Sclerosis


Photo of Bread by Shelley EnszMy story begins in 1975, with Raynaud's syndrome. Scleroderma, however, was only diagnosed in 1988, when they told me I should not be scared, that it was not a major thing. Later I realized that it was not the case.

I was unable to swallow food, and a few times I was at risk of suffocating, and I also had terrible ulcers in my hands.

After four trips to the hospital amidst terrible pain, there were times when I could not even sleep, little by little the rest started building up. My feet became deformed, and now I cannot walk without orthotics. My right hand is almost completely closed, the fingers are turned, and the middle finger is twisted towards the inside.

I have lung problems, I am always tired and I suffer from muscular pain. My stomach and intestines are also involved, and that's not even talking about my eyes, mouth and nose.

I have suffered enormously with this illness, my life is so limited. I cannot do much and I don't want to do much anyway. It has robbed me of all my enthusiasm, and my will to live.

I now seize the day, I do what I want to do, always hopeful that it doesn't turn worse. I thank you for letting me write my story. If someone would like to talk to me, I would be very happy. Thank you.

To Contact the Author

Email: [email protected]
Story edited 03-23-2010 JTD
Story posted 04-14-2010 SLE

Story Artist: Shelley Ensz
Story Translator: Alba León
Story Editor: Judith Thompson Devlin
Gioia: Sclerosi Sistemica Progressiva
Cos'è la Sclerodermia
Raynaud Storie di Pazienti

Dysphagia (Difficulty Swallowing)
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Story Translator: Alba León
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ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith 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!

Go to Giovanna: Sister of Morphea Scleroderma Patient

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