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Connie: Surviving Daughter of Scleroderma Patient

I never really understood why she was sick so often.

Hi, my name is Connie and my mother had scleroderma. I never really understood why she was sick so often or why I had to help out so much around the house when I was growing up. Just recently I started receiving information on scleroderma after asking my mother to explain to me what it was.

My mother was diagnosed with scleroderma when she was thirteen years old. She lived with the disease for thirty-nine years and just passed away on January 10, 1999, at the age of fifty-two. I knew it was going to happen but I did not want to accept the fact that my mother was not always going to be there for me.

I live three states away from my parents so I did not get to visit very often and mom would not tell me when she was getting real bad off because she did not want me to worry. The day before she passed away I got to talk to her for quite a while on the phone. After hanging up I had a feeling something was not quite right, but I did not know what. The next morning my father called and told me she passed away in her sleep.

I really miss her. Even though she was so sick she never gave up. She knew she could never be cured, but she hoped someday all the tests they did on her would help save somebody else and I love her for that. I do not know if I could have been that strong.

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