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Crissie: Surviving Sister of a Scleroderma Patient

If She Had Only Asked For Help

My name is Chris and I just lost a sister to scleroderma on December 28, 1998. Karen was first diagnosed with this dreaded disease about twelve years ago, but she never really told anyone about it until her left leg was amputated in 1996 due to scleroderma.

To this date I still do not know what type of scleroderma she had, as the doctors who were treating her during her last months really did not know much about it. What I want to say now is seek out a doctor who specializes in this disease as soon as you know you have it.

This disease is like a lurker, not really out in the open until it is too late. I am scared because my daughter has tested positive twice for this disease and not one doctor that she has seen so far seems to know what to do about her positive test results.

I also want everyone to know that if you have Raynaud's, scleroderma or lupus, please, please do not smoke or drink. My sister was told repeatedly to stop smoking and drinking. She told everyone that she did, but you just knew she did not. If you asked her about smoking or drinking she would always get defensive.

After she died we found so many things that were appalling. My sister was so addicted to smoking and drinking that she bought the same brand of cigarettes that her husband smoked, and hid them under the cushion of her chair. In a brown paper bag next to her chair we found numerous crumpled cigarette packs stuffed into the bottom of the bag with stockings filled with cigarette packs with bills piled on top of them to hide them.

Then we found medication bottles filled with water and old cigarette butts in them. She hid cigarettes everywhere. During the last months of her life she was on so much morphine that we are surprised she did not burn herself alive.

We found cigarette burns in the chair that she sat in, but covered it up with an afghan. She had a cigarette burn in a buffet, but covered it up with newspapers and such.

If only she would have been truthful with her doctors and her husband and told them that she could not stop smoking or drinking, they then could have dealt with those problems, but she kept stating that she did not do those things anymore. If only she would have said "I cannot stop smoking or drinking" we her family could have dealt with these problems together.

Her doctors always told her that if she did not stop smoking or drinking she would die sooner. If she had stopped, she would have at least three to five more years. I am angry at her for doing this to herself and depriving us, her family, of her love, hugs, humor, and just being my sister. I will miss her sorely and I loved her no matter what she could or could not do.

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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.