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Debbie W: Mother of Linear Scleroderma Patient

It really does help to know you are not alone.

When my daughter was about five we noticed the first of many lesions. Although we went to our pediatrician and a dermatologist, it was not until she was eight years old that I noticed atrophy in her face. An en coup de sabre developed, and she was finally diagnosed with linear scleroderma. After every possible test was run, systemic was ruled out, thank God!

Because my daughter's face was being affected so severely — with atrophy, hair loss, and partial loss of her eyebrow — we began a treatment program. It was two year's of intravenous steroids for three months, followed by a year of injected methotrexate, and then a year of oral methotrexate.

We have been off the medication for two years now. The drugs did help. However, last month our worst fears were realized when two new lesions developed.

We are awaiting our next appointment, but in the meantime I was wondering if anyone out there had experienced a similar situation. I have just discovered this site and read some of the stories. It really does help to know you are not alone. It is scary to think of going through this all over again.

~ Update 08-21-04 ~

Carrie is now sixteen years old. In 2002 she underwent the first reconstructive surgery, a fat flap graft. The operation took ten hours and recovery six weeks.

Although at the time my daughter vowed no more surgeries, she was not happy with the results and has therefore decided to continue. The next surgery will be in November of this year. The doctors are hoping to be able to do all the work they want to do in two more operations lasting about six hours each. The surgeries will be seven months apart to allow the face to heal in between.

Although my daughter has had some very difficult times dealing with the physical and emotional ups and downs, she remains hopeful. She is truly an amazing individual.

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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.