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Robin M: Daughter with Linear Scleroderma En Coup De Sabre

I knew we were dealing with something serious when a depression appeared overnight in the upper left side of her forehead.

Clowning Around by Shelley EnszMy daughter was diagnosed at the age of six with linear scleroderma en coup de sabre. We first noticed a spot on the left side of her forehead that appeared to have lost pigmentation. It transformed into what looked like a bruise on her head that never went away. I knew we were dealing with something serious when a depression appeared overnight in the upper left side of her forehead. The face we had known for six years was changing right before our eyes.

The final diagnosis came with the results of a biopsy performed by her dermatologist. We were referred to the rheumatologist, five hours away. She was immediately put on steroids, folic acid, and methotrexate. Now, three years later, (age nine and still on methotrexate) we have come to accept her condition. It has not improved, but seems to have leveled off. She has had no other conditions and everything seems to be localized in her forehead. There was loss of hair early on in treatment/diagnosis on the upper left scalp. More than the change in the face, the hair loss affected my daughter.

She is an active child, a competitive gymnast, and loves to swim. It was difficult to disguise the patchy baldness. I am glad to report that much of the hair did eventually grow back. There is still part of her left eye brow that is affected, but not very noticeable. We still deal with the constant questions that curious bystanders ask, like, "What happened to her head?". While I know they mean no harm, it is painful to have to explain her story over and over again, especially in her presence. It is a constant reminder of her condition.

We don't know what the future holds. We hope that the treatment is effective and that as she hits puberty, her condition will remain stagnant. The question of plastic surgery has come up. While we have met with a pediatric plastic surgeon, my daughter has opted to not have any surgery at this time. My husband and I have decided to let this be her choice.

To us, our daughter is as beautiful as ever. She has the same sweet spirit, is healthy in every other way, and we would not change a thing about her!

To Contact the Author

Robin M.
Email: Withheld by Request
Story edited 04-11-2010 JTD
Story posted 04-12-2010 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
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ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith 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!

Go to Robin T: CREST Syndrome

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