Suzy H: Mother of Daughter with Morphea

When my daughter Elise was five years old, we noticed a dark mark on her lower back. I thought it was a bruise, but it did not go away. The pediatrician was concerned and sent us to a dermatologist who took a biopsy and confirmed morphea or localized scleroderma. Of course I was scared to death, as there was very little information then.

She was treated at first with antibiotics because the thinking was that it may have been caused by an infection, and then we used topical creams to keep her skin soft. At this point it had spread across her lower back, and one section had gotten hard. It looked like a burn scar.

I got linked to the group Kids Get Scleroderma Too, and there I found out that she should be seen by a rheumatologist. We took her to the dermatologist when she was about nine. He put her on a drug called plaquenil, a quinine derivative used to treat malaria.

At first we saw results, the skin softened and the mark seemed to get light around the edges. She is twelve now, and although it has not gotten worse, it does not seem to be getting any better.

For worried moms and patients, I want you to know that Elise is a beautiful young lady now. The morphea has not caused any ill effects in her growth or range of movement, as I feared it would. She is currently busy performing with a hip hop group. She is embarrassed and gets frustrated with the limited choice in bathing suits, but it does not bother her too much.

At this point I am wondering if the disease has run it's course and we could take her off the plaquenil. From what I have read this disease does seem to run its course, and I would like to give her a break from the meds but I am afraid she will get new lesions.

Any advice would be appreciated.