Justine

It started traveling down her leg, past her calf, over her ankle and ended at her big toe. Her skin was thin, quite swollen, very shiny and warm to touch. The outside edges were reddish in color with some inside areas looking "bruise like" in appearance. I called our family doctor and took her in right away. At first our family doctor said "it looked like a rash to her" I said "it didn’t look like a rash to me." I then said "It looked like some sort of blood disorder to me." The doctor paused for a moment and then said "oh, I think it might be a disease called Morphea and that we needed to see a Pediatric Dermatologist." She had nothing on hand about the disease to give to us and she really couldn’t recall exactly what it was from or how it would progress.

As I drove home from the doctors I remember beginning to feel quite panicked. The drive home was only 10 minutes, but I couldn’t get home fast enough. I wanted to call the Dermatologist and get an appointment right away. I was trying very hard not to show Justine how scared I was but she must of noticed the concern on my face because she asked "if I was okay?" and then she proceeded with a few more questions "if she was sick, what is "Mor-a-phea" (as she pronounced it) and would she be okay?" All I could say to her was "I didn’t really know what was going on right now and that we would find something out very soon once mommy had a chance to talk with the Dermatologist." I then tried to assure her not to worry that we would take care of everything. The only other thing on that drive home that kept running through my mind was that "S" disease. I couldn’t recall the name but something inside kept saying that "S" disease. As soon as I got home I called Children’s Hospital to get the name and number of the Pediatric Dermatologist. I called the Dermatologist and they said "they couldn’t get her in for 3 weeks." 3 weeks there was no way I could wait 3 weeks. I took the appointment and asked if they could put us on a waiting list in case there was a cancellation. If I knew then what I know now ...gosh... If I would of just asked to speak to the doctor I would of gotten in a lot sooner. I have learned to be much more demanding with regard to my children’s health care and have learned the hard way that if you are not happy with something and your not so "acceptable" of things you usually get your way.

After finally getting in to see the Dermatologist, she said it appeared to be Linear Scleroderma (there’s that "S" word) and that she wanted to run some blood tests and do a biopsy to be sure. The biopsy confirmed it was Linear. The Scleroderma takes up a large portion of Justine’s leg and she has a lot of scarring. She was doing fine until January of 1999 when her leg began to atrophy. She has lost 1 inch in diameter(width) in her leg. We have started her on 20mg of Prednisone a day to see if it will halt the disease and halt any more damage from being done to her leg. She seems to be doing okay, but we really won’t know anything until she comes off the Prednisone in August. Now we are contending with the side effects of the Prednisone... the moodiness, the increased hunger/weight gain, the puffiness(she has puffed up a great deal). The hardest thing for Justine right now is the teasing at school because of the puffiness. We’ve tried to diffuse most of it but you know how kids are.

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