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Kasey: Daughter of a Diffuse Scleroderma Patient

A doctor said, "There is nothing I can do for you, just deal with it."

My name is Kasey and I am nineteen years old. My mother was diagnosed six years ago with systemic sclerosis. Although I am sure all of you must know how it feels to have a loved one with scleroderma, there are no words to describe the feelings that I have had over the last six years.

I was only thirteen when she was diagnosed so I was not too sure what it was or how serious it was. The only answers the doctors could give were, "I don't know much about this disease," and even responses such as, "There is nothing I can do for you, just deal with it."

I want to do everything possible to get help for my mother, but she was too scared to hear the truth about the disease.

The last three years of high school I had many research papers to write. Every year I wrote about scleroderma. This did help us both to understand more about it, but at the same time, it scared us to death.

What I have realized, is to be thankful for everyday you do have with them. The hardest part for my mother is accepting that she does have scleroderma and needs to face the facts about it. The hardest part for me is having to watch my mother suffer every day, seeing how much her body has changed in the past year.

She is not at the point that she has to stop working, but I cannot help but feel it is getting close. My parents have been divorced for ten years, but you would be surprised at how helpful and involved my step-mother is. I am not sure I could do it without their support.

My constant worry is that I am the only child, meaning basically I am all she has. I am the one that will be responsible for her when she does get to the point of quitting work. It is a lot of responsibility for a nineteen-year-old. But she is my mother and I will find a way to deal with this.

I am currently looking for some doctors who actually know what they are talking about.

To Contact the Author

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

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.