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Epidermolysis Bullosa

Updated on September 12, 2014

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
EB Simplex
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

Egyptian Magic

Emu Oil

Silvasorb - prescription necessary

Mepitel - contact layer by prescription only


note:

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.

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  • profile image

    sracox 

    8 years ago

    Hello Nick we are the parents of Chloe she is a special baby just like you. We are so glad to hear you are a strong little boy and do what ever you like. Reading your story was touching and we understand that your parents want to be careful but we are glad to hear that nobody can stop you from doing what you want to do and enjoying life. Chloe is 13 days old we don't know what type of eb she has yet. We would like to keep in touch with your parents. Our daughter has a page on www.caringbridge.org go to visit and type her name "chloecox" and you can read her story. your mommy can also e-mail us at chloehc3@yahoo.com we would love to keep in touch with your parents. Please let them know we would like to be their friends and learn more about strong Nick.

  • profile image

    purpledragoncollecting 

    11 years ago

    Hi Seelly. Oh my goodness, I never knew about that disorder. Tell Nick thank you for letting us all know a bit about it and give him a soft hug from me. He is a doll.

  • profile image

    carmella 

    11 years ago

    Hi Seelly. Thank you for taking the time to share your story about Nick and his disease. I had never heard of it before. My love and prayers to all of you.

  • profile image

    verycherryvintage 

    11 years ago

    Hi Seelly. This is a great informative lens. I'm glad Nick has a mild case at least. My gosh, it's got to be very stressful for Mommy. Nick is a doll, give him a gentle hug from me!

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