I am teaching my class how to make a blog. I will show them how to make a picture.
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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.
6 comments:
You look handsome in you suit! What a Lady killer! :)
-Jennifer (and Daylon) Edling
Wow! Lookin' good!
Great picture.....You are sooooooooo handsome...
Hey, Zack! My name is Gabriel Pline. I am a high school teacher, artist, writer, musician... and photographer. Our son, Logan, is 18 months old and has EB simplex (Dowling-Meara). I had a crazy idea the other day to get some of my photographer friends in a car, drive around the southeast US, take pictures of kids with EB doing their thing, then come back to Atlanta to put on some art shows to raise awareness (AND MONEY!) for DebRA. (The families would get prints free of charge, obviously.)
It looks like you're in Utah, which is a bit out of our region, but i need some help getting in contact with folks in the southeast who have kids with EB. Could you -- or your mom and dad -- help with that? I need blogs, email addresses, anything. This project is literally two days old and i don't have everything ironed out, but it's something i believe in and want to make happen.
You (or your mom/dad) can contact me via Facebook (Shmabriel Pline) or email (skagnetti77 -at- yahoo -dot- com).
You are one cool dude. I hope my son grows up to be as cool as you.
Regards,
Gabriel Pline
P.s. -- I think telling people that you got into a fight with T-Rex is straight up AWESOME. I usually tell people "You should see the OTHER kid!" haha
Hey Zack, your blog is looking good! Hope to see you, Brently and your Mom and Dad very soon! Good job...and your picture is great! Very Handsome!
Hello to the coolest kid on Earth:) I'm Courtney, Tripp's mom. I couldn't find your email, but I wanted to ask you if I could include you in an EB Awareness Video I'm trying to put together for this week. It would have your picture and your blog address. Would this be okay with you? BTW, You are one awesome dude.
Wish you could come spend the day with me and Tripp:)
courtneyhroth@gmail.com
Love, Ms. Courtney
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