Living with EB

[sardaribegum]

Hi sarah, I'm sure you'll achieve your dreams. My cousin in india with EB used to watch kids go to school. He did not get that chance. Now my nephew with EB in india. I hope he gets to fullfill his dreams just like you. Kudos Sarah!

[robpleticha]

New Online Community for people affected by EB. In 5 languages, developed by NORD, EURORDIS, and DebRA Int.

Google Rare Disease Communities to find it, come share your story

[ladysilent22]

aww what a nice brother

your can do anything you put your mind to

[5033481boy]

i got EB but i dont got it this bad and public school was great but the second u get around to the 7th grade man they made fun of me every single day but i didnt let it bother me now im in 10th grade and what i realized is the older i got the better i began to heal now no one at school nows i have it but when i do get hurt ints not noticible i just make up a lie and say i fell or got into a fight and then in a week and a half its all healed and my skin tone is bak but my skin is pretty tough

[CutieTheGP]

@5033481boy I'm REALLY happy to hear that about you, thx for sharing, it made me happy:)) ps- i dont have EB.

[5033481boy]

@CutieTheGP Thanks i guess...but its not as bad as it was when i was lilttle im all good now i look good is what people say just look at my profile pic on youtube, but it is true they still dont have a cure for it but all we know for sure is that the older you get the tougher your skin becomes if you treat yourself right all you have to do is stay healthy and stay in real good shape if you do that its better then having bones or fat because they wont help you get better as much as muscle can..;)

[CutieTheGP]

@5033481boy OMG!! You're fricken hot!! but anyways, i'm still that their is no cure for EB, but i'm glad to hear you're okay now:)

[ichaemha]

You're a great girl!!! Keep on pursuing your dreams, and yes, u can make it through dear!!

[KKHellokitty22]

My best friend Harlee Bass has this...you may kno her :)

[lucybug97]

@KKHellokitty22 , SHES LIKE MY BEST FRIEND, WE ATE WITH THEM AT LUNCH ONE DAY WHEN WE WERE IN DENVER:D

[JUSTINLUGO956Prod]

i have DEB and im 20 years old going on 21 this year if anyone needs advice about this disease feel free to send me a message

[bch208]

EB is not that well known - We didn't even know it existed. She was 2 weeks when she was diagnosed. Testing for EB if its not in your family history is something you wouldnt think of. My niece is a very strong, brave & wonderful little girl who is doing the best she can & my sister agreed to do this article to spread awareness. I'm just hoping that my niece never gets to read some of these comments because they would probably make her feel worst than she already does.

[chrystal16]

MY cousin is a strong girl and she is going to be a big women!!!

[123mariofan123]

that girl is a cutie!

[Bellaella86]

This might be the ONLY reason I would have an abortion. NOT because I don't want to "deal with them" but because I don't think I could "deal with seeing them and the horrible pain they feel everyday". I am ProLife, but I know and have seen what these children have to go through daily and I couldn't handle if my daughter or son looked up at me crying, asking why I let him live! I do believe, as wrong as it sounds, I might end up killing myself and them. To put an end to the misery ='(

[routex7044]

well its a life of pure torture i'm sure those people beg for death all the, i believe the wounds are comparable to 3rd deree burns and if you've ever had a third deree burn even a tiney one the pain is excruciating imaggine all over your body all the time it must be horrible

[spearrbk]

This isn't cruel and you'd know this if you've seen the johnny keneddy story. But abortion is available for a fetus who has EB

[bch208]

@spearrbk Most people don't know or expect their child to be born with EB they find out after the child is born. As a matter of fact 10 years ago not even an amnio could tell you if your were carrying a child with EB. Today they do have the technology but if you don't know about EB and it's not part of your prenatal testing how would you know you are carrying an EB child?

[xilixnicexilix]

aww i feel so sad she wants to do so much and cant really do to much with that condition....does anyone know how it developes i heard on a comment on another video that something to do with parents being in the same bloodline..or same kinda genes? something like that i cant find it anymore but it was basicly that. anyone know?

[37361811]

I feel so bad, God be with you and heal you, For with God nothing is impossible!!

[DangerousDan777]

I have EB .. im 16 now and my skin can be like that to .. it takes me an average of 20 mins morning and night to pop the blisters and put cream on

[kimrocks3000]

poor child

[07Babygal07]

I have Eb aswell.

the exact same as her

Im 13,

My dressing change usually takes an 30 min.

[SPANISHROCK88]

I know how she feel cause I also have Dystrophic EB is not that bad but it gets bad.I just want to tell her go for your dreams.If you guys also want to see me I have videos on youtube juct click my screen name

[PrincessSilvia]

Nice job honey...

[runningmanthorsten]

Poor Girl!