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'There's Always An Exception ... And I'm Usually It!': My Story, #1. by Karen Lynn Vidra, The Texas Tornado
Saturday, September 22, 2012
Rated "G" by the Author.
A girl with xeroderma pigmentosum shares her story.
My name is Doreen Calvert. I live in Teaneck, New Jersey, with my family, but unlike most folk, I don't do my playing outside until the sun goes down. I can't be out in the sun or else I could get very sick, possibly even die.
I have a very rare condition called xeroderma pigmentosum. Basically what that means is my skin is so sensitive, I can get huge blisters just from being out in the sun; I have to wear long sleeves and wear special medicated cream to keep my skin moist, as well as wear shades, and wear something to cover my head.
If I get exposed to the sun for more than five minutes (IF that if I'm lucky), I can get very huge, painful blisters and they can get infected, and then I end up in the hospital. I am also susceptible to skin cancer, so I have to be extremely careful.
I am 12 years old and am in the sixth grade. I am homeschooled. I am an only child. I don't have any brothers and sisters.
What I like to do mainly is listen to music (country) and read. In addition, I like to draw, write stories or poems, and ride my bike (again at night; same if I play basketball or frisbee). My room is kept dark, so no sunlight gets on me; the light from the sun or daylight hurts my eyes; they are extremely sensitive.
It is not easy living with a condition like mine, but I've done pretty well, all things considering. I just pray that continues and that I don't get cancer; that would just suck!! I pray that God protects me each and every day.
Well, I gotta go; it's time to switch classes; I will write in here again soon! Sorry it's not much, but this is how it is for me and how I live my life. Take care and God bless!
It is wonderful how you can get "into the mind" of your characters and express their emotions, needs, and desires as well as their situation. Merci, mon amie du Texa. Amour et paix,
My first wife had a condition such as this. Cancer it was and it took three years but she was fighting several battles. Hang in there new medicines are cropping up ever day. Prayer covers all healing but you have to be a very, very strong believer. Amen