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Nickole: Surviving Daughter of Diffuse Scleroderma Mother

It is not easy, but you must be very supportive and patient

I was ten years old when my mother died of scleroderma. That was in 1989. I remember her being very sick all the time and going to the hospital on a regular basis. Her skin was really hard and she lost a lot of weight. It was hard on our family. I helped my mother out a lot with dressing, cleaning herself, and taking her to the bathroom.

She eventually was in the hospital for good, and that is where she died. I am not sure how long my mother had scleroderma, but I do know that the doctors did not know much about it at the time. My mother's kidneys failed her first, then her lungs.

I miss my mother a lot. Now that I am older I try to research as much information that I can on scleroderma. I want to know about the disease and try to understand what was going on with her.

I feel for the families of these scleroderma victims. It is not easy, but you must be very supportive and patient. They are going through a rough time, as with any disease.

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!

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