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Debra R: Mother of Emma, Linear Scleroderma Patient

It is so good to have support and be able to ask questions and have them answered.

Em was just eighteen months old when a particular rash started on her torso. We took her to our general practioner and he said it was just a rash.

Then I noticed a 'dinting' affect on Em's shins. After our pediatrician saw her, he sent us to our major hospital which is six hours from our home. All we were told was that Em had linear scleroderma. From there we read everything we could. This was not good. As far as we knew she only had a short time to live.

Well, here we are and Emma is now thirteen years old. She has gone through a lot, but not once in all that time has she ever asked "why me." Emma is the most courageous person I know. She did not have a normal childhood as she was always with doctors and nurses. They even call her 'the forty-year-old midget.'

Recently the specialist told us that her disease is burnt out, as Em has had no more new sites. So now we are going to fix what the disease has damaged. We are looking at skin grafts, collagen injections and whatever else is needed. Emma is not taking any medication at all now. Apart from the occasional emotional fit, she is doing great.

I now am beginning to research this disease. I did not think many people had scleroderma, but I now am finding and talking to lots of people with the same thing. It is so good to have support and be able to ask questions and have them answered. Now I can explain to Emma what is going on.

All in all, I think I have the most incredible daughter and hope that other people respect and support their loved ones with this disease. I would be more than happy if other sufferers of this disease could get in touch with me as I have many more questions.

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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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