I had only lived four years of my life like any other healthy, normal looking kid.
It first started out like a big, long bruise on my forehead. My family did not seem to be too worried about it, I mean, they just thought I had fallen and bumped my head.
Weeks went by and it still did not go away. The color changed. It went from a light pink to a purple. My mom took me to the doctor and they just referred me to a dermatologist. He said it was a reaction to the sun and gave me medication to put on my forehead every time I went out into the sun.
My mom knew it was not just a reaction, she knew it was worse. I went to countless doctors and specialists for a diagnosis. Finally my family and I got the news we had waited for, for so long: Linear Scleroderma.
My older sister found a way to cover up the nasty disease on my forehead. Bangs! It was a great idea! She gave me bangs when I was in kindergarten and I have had them ever since, twelve years later!
Growing up was hard. The right side of my face began to get disfigured. I was teased a lot in elementary and middle school. Boys did not like me; people judged me because of the way I looked. It was really hard. Sometimes I did not feel like going to school because I knew someone would push my buttons.
I then began the best years of life: high school! It's not as bad as when I was younger. I have more friends and even an occasional boyfriend here and there. I even have a great one right now. He's the only guy I have told about my case. I am too ashamed and embarrassed to tell anyone else.
My doctors says I could get corrective surgery to make me look like everyone else. I am kind of debating if I should or not. If I do, then I'll get it when I graduate from high school in one more year, or maybe not.
I have learned to live with the way I look. I can't kick myself in the butt because of it, it's just the way my life happened.
Since I wrote the first version of my story, I have gotten engaged, graduated high school, and found a job as a Certified Nurse Assistant (CNA). Plans for the wedding are still far away. We are hoping to get married in two to three years.
I graduated high school in June 2004. It was a big accomplishment! I started college and plan to become a massage therapist. This career choice should not take long to accomplish. I also found a current job as a CNA. It pays well for the time being, but I may not stick to it for long since I will be moving soon.
As for my surgery choice; I have decided not to get it done. I have seen how the procedure goes and, let me just say, it is not my cup of tea! I was really grossed out and even told I would have to get my mouth wired shut for four weeks. With my appetite, I know I would not last for a couple days!
Email: [email protected]
Story posted 01-28-03 SLE
Update edited 10-08-04 JTD
Update posted 10-22-04 SLE
Photo added 10-22-04 SLE
Story Editor: Judith Devlin
This story is in the book, Voices of Scleroderma Volume 3.
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.