2 days ago my Dad was telling me how awesome it was that I never broke my toys or ruined a pair of clothes. Well my glasses accidently got ran over by the car yesterday, I guess things just kind of even out.
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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.
5 comments:
Oh man!
ewww..sorry to hear about the glasses..we just had to buy a new pair too after my little sister grabbed Dad's pair off his face and twisted them until they snapped in half..then she jumped off the couch and stepped on the lens crushing it..he looked so funny wearing glasses taped together with duct tape and one lens....hope you get a great new pair...love, casey
We're a family with a new little one with DEB, it's all quite tough, but seeing you and your apparent vitality is wonderful and exciting. We'll follow you eagerly.
Cheers.
Hi Zack
My name is Jenna and I came across your site. U are an amazing brave courageous fighter and hero. You are full of smiles, spunk, and life. I was reading one of your old post but how u just want to be treated like any regular kid. I often get judged because I have major health problems and special needs. So I am sometimes learly at telling people that i have major health problems and special needs.
My site is: http://www.miraclechamp.webs.com
This is cool!
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