My name is Kerry Ann and I have EB, epidermolyis bullosa, it is a painful skin disorder that I have been battlling since infancy, I wear mittens at night to protect myself from scratching and my feet and hands are wrapped in gauze from the painful blisters. Children like myself with EB are sometimes called Butterfly Children, but butterlies are beautiful and this condition is not, it is sheer agony but the fact is I try not to think two much about the ugliness, I am thankful just to be here.
I am a teenager now, thirteen and kids my age can be brutual but I do have friends from church, Mom and Dad decided to homeschool my brother. sister and I, because she thinks its better for all of us. My brothers and sister are not affected with Eb, but it is hereditary, my Mom or Dad do not have the condition though thank the Lord, so we are not sure where it came from maybe somewhere down the family line, but it does not matter, what matters is I have it, and we have been dealing with its implications in this condition, the condition does limit my ability to walk, so I often use a wheelchair because my feet are covered in painful blisters, but as I said I do not dwell on the fact that I have Eb, but sometimes the pain is so intense, I cant just forget it.
I am not writing about myself for pity but to educate people on EB, and to make others see that children with EB, are children just the same and though I have trouble with some things I enjoy hanging out with some of my friends from church, and I love playing on my computer, reading, writing, playing with my poodle, and so many other things that thirteen year olds do. I watch Hannah Montana nearly everyday and would love to get to see her in concert, and I think the Jonas brothers are awesome, and cute LOL.
Well I better go, its time for me to get the special lotions to put on my blisters, get some relief.
Kerry Ann Winchester~