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Soledad: Diffuse Scleroderma with CREST

I am having a hard time understanding my illness, and its symptoms.

I was diagnosed with scleroderma three years ago. I am having a hard time understanding my illness, and its symptoms. I am in a stage of exploration and self-discovery. I have tried to find different therapies and sometimes I feel fine, but then I have a crisis, I fall, pick myself up again, time and time again.

I am thirty-four, with two children, one is seventeen and the other eleven. I have a lot to fight for, I am mother and father to them.

I would like to find someone to talk to, that understands what is happening to me without pitying me, because that's what I see in people's eyes, pity, perhaps sometimes I even see it in myself.

Cheers and good luck.

To Contact the Author

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!

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.