I have an 8 year-old son who has linear scleroderma on his face. The symptoms first started with a red line, from the hairline straight down the front of his forehead to the tip of his nose. It took me a couple of years of Doctors asking me what it was, and I always had to reply that I didn't know.

Finally, my family Dr. sent my son to a dermatologist and one look from this Dr. - it was confirmed - he had scleroderma. Since my son was about 2 1/2 years old, he has been watched by a team of Dr.'s at Toronto Sick Childrens Hospital, every six months at first, and now has been decreased to once a year. He was also placed on Amoxicillin for 1 1/2 years. Which in my opinion did nothing!

The skin on his forehead has quite an indent and was sent at one point for a CT Scan to make sure that it was not interferring with the shape of the skull. All turned out to be fine, thought they stated that they did find some "calcium deposits" throughout the brain. The radiologist said not to be concerned with this, though I wonder if this will have some further ramifications down the road. At present the scleroderma has stopped progressing - the Dr.s said that it would "grow" for 3 - 5 years, while it still had a reddish tinge on the edges of the line,it was still progressing.

Now, my son's right nostril is slightly "pulled up", and a couple of lines have formed from the bridge of his nose in toward the corner of the right eye. Needless to say, the Dr.'s were concerned about whether or not it would affect his eyesight. So far nothing in that area.

When my son was 1 - 1 1/2 he fell on an escalator and needed stitches in the middle of his forehead, and the Dr's seem to think that the trauma to the area may have triggered the scleroderma. Who knows??

Now the hardest thing, he seems to be going through - are the cruel, and nosey remarks made by adults and children. I think the adults are the worst though. Last year at Christmas, my son and I were walking through a mall and Santa Claus came up to him to give him a candy cane. Stopped dead in his tracks, and asked my son "what happened to your face?" How cruel can you get, though it is becoming a more frequently asked question than what I would like. How is my son to respond to that?

All he says - is that he was born with it and it is like a birthmark. Why get into a long story with some of these people - it is none of their business! I am also wondering if there are other people out there with the same type of scleroderma and where I can get some information on this condition. I have a few numbers to call for some information, but would like to hear from others.

Thank you,
Shari Bumstead

You can reach me at: tiara_41@hotmail.com
 

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Copyright © 1996 Shari Bumstead