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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

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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!

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Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
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