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Vanessa: Linear Scleroderma

Bangs! It was a great idea!

VanessaI 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.

~ Update 10-07-04 ~

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!

To Contact the Author

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
Juvenile Scleroderma
Linear Scleroderma

This story is in the book, Voices of Scleroderma Volume 3.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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