When I was very young, two or three years old, my mom started to notice that the top of my scalp was changing. As she fixed my hair each morning she would notice that my hair was getting thinner in one spot and was concerned that it could be alopecia or something similar. For almost three years we went to see specialist after specialist trying to get a diagnosis, meanwhile my condition is getting worse.
Finally, at the Children's Hospital in Milwaukee, we found a doctor who had seen it before and knew that I had linear scleroderma. Dr. Wortman told me that I was lucky, that there was only one other child diagnosed in Wisconsin with scleroderma at that time. Her condition was so bad that she needed her leg amputated. I will never forget that girl's story. When I would feel sorry for myself I would remind myself that I still had all my body parts.
I was put on Dilantin to help try to combat the disease, but each visit when I went in, the measurements of my area of damage seemed to get a little bigger, and the hole a little deeper. My mom was concerned about my brain, but I just hated the little green triangle shaped pills.
When I was twelve years old the area stopped growing and I was considered in remission. A two inch by four inch patch of hair was missing from the top of my scalp going down through my bangs in a line that continued all the way down my forehead to the edge of my left eyebrow, but never damaged the eyebrow itself.
I never allowed myself to be very social because I knew that if I just moved wrong or brushed my hair accidentally with my hand or the wind blew everyone would see that I was bald, and children can be so cruel. But as I went to high school I found ways to disguise it involving teasing my hair and lots of hair spray! I had to have hair over my forehead to cover the scar on my forehead that looked like a gross sunken-in bruise, all purple and shiny. Finally, right before graduation my family splurged and took me to a wig-maker who was able to take one wig and cut it into small pieces that fit my bald area on my scalp. It is held on with medical grade double sided tape and I can even shower, sleep and swim in it!
When I was fourteen I developed epilepsy and my mom and I always wondered if it was caused by the scleroderma. No doctor every really looked into that theory, so I don't have an answer to that, even to this day.
My life is happy most of the time and with the help of my hairpiece I am able to be a little less self-conscious in public. I am twenty-nine now and I have a husband and two children and lead a fairly normal life.
I am very grateful and have said prayers of thanksgiving many times for the way this disease had effected me. It could have been systemic, it could have been on a more visible part of my face, I could have been in pain and had organ failure too. But it's not. My problem is mostly cosmetic and I have low immunity so I get sick easily.
But I am dealing with it. It's not the end of life. It is the beginning of appreciating life and learning to find things to be grateful for.
Webmaster's Note: Epilepsy is a known complication of linear scleroderma.
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Story edited 10-22-07 JTD
Story posted 10-25-07 SLE
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Story Editor: Judith Thompson Devlin
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