Living with PRS | Teen Ink

Living with PRS

December 20, 2013
By laura179 BRONZE, Hartland, Wisconsin
laura179 BRONZE, Hartland, Wisconsin
1 article 0 photos 0 comments

I woke in the hospital bed and my face was forever changed. There were stitches from the back of my head to the top of my nose. I had a partially shaved head. There were stitches on my side from where doctors took out part of my rib to reconstruct my nose.

I was so mad at my parents. I blamed them. I had no idea that there would be a scar going down the center of my forehead. But my parents didn’t want me to know all the truths about the surgery. They thought it was better that I did not know all the details as I told them I was scared about even going to the hospital.

When I saw my face after the surgery I was terrified. All I could think about was how my classmates would react. How anyone would react. The thought of people thinking differently ate away at me just like the PRS.

Parry Romberg Syndrome. This is the diagnosis I received as a toddler. But it wasn’t until eight years later (after my surgery) I understood how PRS would shape my life.

PRS is an autoimmune disease that causes my body to attack healthy cells. In my case, PRS attacked the left side of my body, primarily my face. Up to the time of my surgery, all PRS meant to me was questions. I frequently was asked if I had a bruise on my forehead or if I had fallen. But that was the disease atrophying my face. A rapid progression caused the surgery to be 5 years earlier then originally planned.
Once school started in the fall, my mom bought me scarves and headbands to help cover up my scar. She reassured that I would be able to grow out bangs so no one would ever see my scar. As time passed, my bangs covered up the scar. It was my security blanket.

At my next hair cut, I made the decision that changed my outlook. Courtney, my hairdresser, was someone I admired. She owned her style. She carried her exocentric style confidently into any room and I wanted to be like her and have the confidence to own my scar.

So I said, “Courtney, I have decided that I am going to grow out my bangs. My scar is a part of me and I am done hiding it.”

She said, “Laura, that shows me the kind of character you possess. Don’t ever let anybody take that from you.”

My scar is going to be on my forehead forever and I’m covering it up. I was done letting this disease define who I am. The 11-year-old girl I was showed both amazing strength and character.

Parry Romberg has shaped my face and who I am. The scar on my face is not going to influence how I feel about myself. Living with PRS has showed me that I am confident in my abilities to overcome any challenge.



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