It was December 1990 when the phone rang at my apartment early in the morning. On the other end was my sister telling me she was diagnosed with scleroderma.
She said she was very sick and she asked all of us brothers and sisters to come down to see her. My older sister and brother went. As for me I could not go, and to this day I have never forgiven myself.
My brother said it was probably a good thing that I did not go. She was so sick and her skin was so hard. Then it went in her internal organs. They had her on a kidney machine.
Two months after she was diagnosed she died at the age of forty-three. When they brought her up to Pennsylvania for the funeral, it sure did not look like her, because of the hardening of her skin and her hair which had turned snow white.
She never smoke or drank; actually, she was like an angel. She was a great mother and sister. I would never heard of the disease until then. It's a horrible thing and I hope they will find a cure.
My niece had the first walk-a-thon for scleroderma in Tampa, Florida on October 23, 1999, in memory of my sister Tiffany Kulcycke. It was a success, and I sure hope next year there will be even more support.
I also have a sixteen-year-old niece in Michigan who has localized scleroderma. I guess the other kids give her a real hard time because of the skin discoloration.
Thank you for letting me submit my story. I am so glad I found this web site. I needed to find out all I can about this. May god bless each and everyone of you.
New email address needed 09-26-06 SLE
Old Email Prefix bowserpamela
Story Artist: Shelley Ensz
Types of Scleroderma
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.