Quinn is Ethan's sister, she made us these cools hats and now we are BFF's.
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I didn't really get into a fight with a bear or a t-rex.
Welcome to my blog! Chances are you came to my blog because you asked what happened to me. Well I need to tell you the truth. I did not get into a fight with a bear or a t-rex. I hope you won't be mad at me for not telling the truth to begin with. It is just that I get asked so often that I get bored of telling people why I wear gauze bandages all over my body. When we go shopping we can expect to get asked 2 or 3 times on average. Somedays nobody asks somedays tons of people ask.
I have a rare skin disorder called Epidermolysis Bullosa. I have the recessive dystrophic form, but we like to shorten it and just call it RDEB. I will give you a very simple explanation of it and if you want to know more (which I hope you do) then you can click on some of the links under the "learn more about EB" section.
EB is a genetic skin disorder. I was born with mutations in the Collagen 7 gene. Collagen 7 is one of many proteins that form "hooks" kind of like velcro, the hooks when healthy hold skin to your body. The Collagen 7 hooks are responsible for holding the dermis to the epidermis. Because I don't have them, friction from everyday activities, like running and jumping and playing cause my skin to separate from my body. When skin separates at the dermis/epidermis layer it forms a wound that is similair to a 3rd degree burn. These wounds are deep and cause serious scarring. Collagen 7 hooks, (the real term is fibril) are also needed in your eyes, mouth and digestive tract. Because I don't have them there either, I often have just as many wounds inside as I do outside.
Yes it hurts, yes I wish it would go away, but it does not hold me back. I am so stronge and I am very brave, and I have eb to thank for that.
I have a rare skin disorder called Epidermolysis Bullosa. I have the recessive dystrophic form, but we like to shorten it and just call it RDEB. I will give you a very simple explanation of it and if you want to know more (which I hope you do) then you can click on some of the links under the "learn more about EB" section.
EB is a genetic skin disorder. I was born with mutations in the Collagen 7 gene. Collagen 7 is one of many proteins that form "hooks" kind of like velcro, the hooks when healthy hold skin to your body. The Collagen 7 hooks are responsible for holding the dermis to the epidermis. Because I don't have them, friction from everyday activities, like running and jumping and playing cause my skin to separate from my body. When skin separates at the dermis/epidermis layer it forms a wound that is similair to a 3rd degree burn. These wounds are deep and cause serious scarring. Collagen 7 hooks, (the real term is fibril) are also needed in your eyes, mouth and digestive tract. Because I don't have them there either, I often have just as many wounds inside as I do outside.
Yes it hurts, yes I wish it would go away, but it does not hold me back. I am so stronge and I am very brave, and I have eb to thank for that.
Learn about eb!
- Tripp
- Bianca
- Jonah
- Angel Bella
- USEB
- John Hudson
- Grace
- Daisy
- Exciting news about a possible treatment
- anthony-martinez
- http://sarahandeb.makeswebsites.com/index.php
- http://www.cotaforkyleh.com/
- http://www.debra.org
- http://www.ebinfoworld.com
- http://www.ebkids.org
- http://www.ebpatient.com/
- http://www.ebzone.bravehost.com/
- http://www.everlastingbutterfly.com/
- http://www.freewebs.com/jensuniverse/index.htm
- http://www.xanthamaree.com/
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About Me
- Zack Troop
- Utah, United States
- Hi, I am Zack I am 8! I love playing video games, soccer, t-ball and hanging out with my many friends and cousins. I live with my Dad and Mom, sister Brently and dogs Cinderella and Olivia. I wanted to get my own blog so I could tell people about my EB (Epidermolysis Bullosa). People are always asking what I got into or how I got burned and my Mom and I sometimes don't feel like explaining it. I think it is fun to tell people I got into a fight with a T-Rex or a bear, but it is probably not nice to lie. And besides, I want others to learn about eb, I want them to be able to understand why I look the way I look and that I am just like everyone else.
1 comment:
He looks really cute in that hat! You are such an awesome mom to do this Kaydee!
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