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You’re Not Alone
By Samantha Murray
If you’re reading this, then you’re probably like me, a kid with scleroderma. Kids aren’t supposed to get this disease—it’s for grownups, mostly women like my mom’s age.
When I was around 3 years old, my parents and I noticed something: My right index finger was bent, and my skin was itchy. Mom and dad took me to some doctors who thought I had allergies. It took a while for the doctors to figure out why my skin was dry and what caused the cuts on my skin. They told my family and me that I had scleroderma, and I had two kinds—linear and morphea. Linear is a line on my skin, and morphea are patches of thick skin.
I was scared.
When I found out what I had, I was scared. My parents had never heard of scleroderma, and we all thought I was going to die. My skin was tight and dry, and it was hard for me to do a lot of things. I couldn’t do ballet, soccer or even walk for a while.
Luckily, I found an excellent doctor named Dr. Lehman, who works in New York, about four hours from my house. My grandma and I see him for appointments about every six weeks. He told me to take this medicine called methotrexate that my parents inject in me once a week. It makes me feel better.
Though I didn’t know any other kids who had the disease, thanks to the Scleroderma Foundation I have since met some people my age who have it. Some kids are really sick with it, and others have the skin form like me.
I think it’s really important for kids to be able to talk about scleroderma with each other, or anyone else who will listen. I know I felt better when I could talk about it to someone who understood.
I feel normal now
When I first got scleroderma, kids used to make fun of me and call me mean names. Now, kids are nicer to me and are not afraid to ask me some questions. That makes me feel normal.
There are some differences. My right foot is shorter than my left because of scleroderma. That makes shopping for shoes difficult. But I still play soccer and ride horses. And although my finger is bent and my skin looks different, I am not sad about it.
I am in the seventh grade at middle school and I have some good friends. My three younger brothers don’t treat me any differently than any other older sister is treated!
I hope you got something out of this article. If you would like to contact me, send an e-mail to cmurray811@yahoo.com.
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