Hi, I'm Nick and I have Recessive Dystrophic Epidermolysis Bullosa
Here I hope to explain a little about my skin disorder Recessive Dystrophic Epidermolysis Bullosa. Actually I'm still pretty young, so my mom's doing this for me, and for everyone else with EB.
By the way, I'm Nick. I'm 6 years old and I have a 'mild' case of Recessive Dystrophic Epidermolysis Bullosa. Although it's a 'mild' case, yeah, it still hurts, sometimes worse than other times, but because I'm Nick, I don't let it stop me. I do my thing, my way, mom fixes my owies and pads my bad spots then I'm off and running again.
Most people with EB have their whole bodies covered in painful wounds that do not heal. I've got the doctors baffled because for some reason EB only affects parts of me. Some of the places are worse than others, but I heal in most places for a short period. Docs call me the anomaly to the disorder.
I taught my parents that just because I have EB, you can't stop me from doing what I want. Sometimes mom just 'doesn't get it' but she's learning to let me do what I want. Dad just shakes his head and smiles. I may have EB but I'm enjoying life.
I love to ride my bike, skateboard, play soccer and football (carefully), tease my older sisters, play in the dirt and play handball. My favorite toys are cars and motorcycles, building toys, heck anything that looks like fun.
What is EB?
EB is the shortened way to refer to Epidermolysis Bullosa. I have RDEB - Recessive Dystrophic Epidermolysis Bullosa. I'll expalin later the different kinds of EB- and no, none of them are good.
EB, in short, is a skin disorder in which a persons skin is quite fragile. When babies with EB are born, they are referred to as Butterfly Babies because their skin is as delicate and fragile as butterfly wings. There is no cure and no treatment other than carefully protecting and bandaging (no adhesives) your skin.
Any trauma to the skin, whether it be as gentle as gentle hugs, crawling, walking, wearing clothes or other daily routines, will cause the skin to blister and slough off. This then looks and feels like having 2nd degree burns. This is not limited to the skin outside of the body, it also affects me interanally as well. Internal problems occur in many places, including the esophagus, colon, inside the mouth and in the eyes.
Different kinds of EB
DDEB - Dominant Dystrophic Epidermolysis Bullosa
RDEB - Recessive Dystrophic Epidermolysis Bullosa
JEB - Junctional Epidermolysis Bullosa
What causes EB?
EB is genetic. It's one of those genetic things that until you have a child born with EB, you have no idea that you are a carrier of that gene.
There are only a few places nationwide that can run the specialized tests for finding out if you do carry that gene. Even if you have ultrasounds done or even an amniocentisis, it will not show that you may have a child with EB.
Is EB contagious?
No, it's genetic, you can't catch it.
Mom needs a break - back later with more info.
Mom is still trying to get the whole thing written up about what happened when I was born. She'll finish it some day.
Ok, I know, it's been a long time. I, mom, just can not get to finishing it.
Our Favorite Products for skin & Wound Care
Aveeno Lotions & bath products
Neutrogena Sun Block Products
Silvasorb - prescription necessary
Mepitel - contact layer by prescription only
I have no control of the Advertisements on this page.
Any skin related ads on this page most likely has nothing to do with helping people with Epidermolysis Bullosa.
I do not personally endorse any of the advertised products or services that I did not put on here.
Best Links for Help and Learning about Epidermolysis Bullosa
- EB Info World
This site was created by a mom who's son has EB and who has lost a child to EB. Chock Full of Help, Support and Learning! There is even a chat room on Saturdays and a help board to ask questions and get answers from folks who live with this every da
- EB Kids
Short site by another mom who had children with EB.
Dystrophic Epidermolysis Bullosa Research Association