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Manu: Daughter of Patient with Systemic Scleroderma


White FlowerHello everyone, I recently lost my father, and in his last moments he suffered very much. He was affected by systemic scleroderma that began with a simple inflammation of his hand in November of 2006. This degenerated very quickly until the end, on November 3, 2009.

In quite a short time the illness had attacked his kidneys. He was subjected to dialysis three times per week, as well as his heart, lung, intestine, and esophagus. His weight dropped constantly, his skin hardened and turned dark, his hands began to curve at the fingers and he had arthritic pain.

We tried everything to save him, but it was not possible. The cures, mostly intravenous, that he was subjected to, did little to help him. In the last days, it was not even possible to do that, because he would go into cardiac and pulmonary arrest.

I hope sincerely that the research on this terrible illness can give answers and positive news to everyone that is affected by it. I had never seen such suffering, and I hope I never have to go through it again.

To Contact the Author

Email: [email protected]
Story edited 12-03-09 JTD
Story posted 04-02-10 SLE

Story Artist: Shelley Ensz
Story Translator: Alba León
Story Editor: Judith Thompson Devlin
Manu: Figlia di Padre Malato di Sclerodermia Sistemica
Cos'è la Sclerodermia

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ISN Translator and Editor: Alba León

Alba LeonAlba León is the ISN Translator for this page. She is studying international relations in Mexico City.

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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