Epidermolysis Bullosa (EB) Awareness video (extended)

[fizwizbiz96]

I know a little girl who is a case like it (sorry for my english) she is 6 and live at the hospital... :(

[DWarrior4]

Unimaginable, poor children

[leann824]

stem cell can help this disease.

[nikkiwolf22]

@mfrican1127 i still think there could have been a better way to express your hatred, in my opinion. i just muted the video and went on with my life. anyways, the original comment made you sound like a heartless troll, not someone who had any connection to the illness whatsoever. sorry for the misunderstanding, though

[kellyatjcb]

I have EB and have out grown some of it, but still blister, I used to get them on the inside also, and has distroyed my kidneys and bladder

[ryansk8ter71]

i personaly have EB and i thin its great that these videos are being made. i have a mild case but it still sucks alot.

[ajones42973]

It is important to note that there are several different types of EB. Ranging from mild to lethal. My brother was born with Recessive Dystrophic EB and 90% of his skin came off in the birth canal. That is how severe some forms are. I dont think most of us can wrap our minds around that. We know that he experienced pain probably from before he was born until the moment he passed. RD EB also affected his intestines,esophagus and mouth. Painful inside and out.

[shadowabs]

i have eb 2 but only on my feet.. wish a could get rid of it :'(

[chanzbeavers]

hi i have EB to but im not suffering at all im living my life to the fullest n im not letting no skin disorder stop my im 23 years old n married n i have four children i take treatment at U.A.B. in birmingham Al i like to think that i have been cured n a way cuz i dont hurt as much so i like to think every one that made it possible for me to get this far alot of love from me

[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

[denisemunoz1]

doing a project on epidermolysis bullosa my cuz haz it inspierd me ani i love ur vidio made me cry

[beachmums]

Good on you for showing the world, I have a 15yr old son with simplex dowling meara, we have given him the chance to have a life he runs 4km in the cross country race for his school, he hiked 64km over 4 days at school camp and yes it caused blisters but nothing stops him. He rides a skate board and looses skin when he comes off but HE LIVES A LIFE and many of you EB'ers can too especially with Simplex dowling meara, its gets better with age.

[kjmelee21]

Born an raised with EB///21 years old now///my legs are the worse all one huge scar..

knuckles,bows,and knees are jus pink an tear with the greatest of ease

[commandercody8722]

A very good friend of mine has EB and is in the hospital. The doctors said that it is a pretty bad case and he will never be able to run jump and play and he wil most likely be bed ridden for most of his life :, (. I really hope that they find a cure for this horrible horrible genetic disorder.

[thtoneguy3321]

wow this girl i love little 2yr old neice died from this i was crying on the fone for the first time in a while and it was the first time me ans her have talked i was like omg this is sooooooooooooo sad i couldnt think of anything to say i was like wow this sucks but now i'm still crying and shes ok im like omg right now this thing sucks i feel so bad for the suffers <3

[ShawnSabotage1]

my 3 yr sister has eb they told her how she had she shouldnt had made it thru the night she was born but shes here she was just in the hospital have this week i believe she mighta had a staff infection but she is good if you'd like to see her message me and ill send a link but shes a fun loving little girl that loves wiggles

[5033481boy]

wow this sucks i have EB 2, but not to this extent i have it on my whole entire body but its not that noticeable im able to run jump tackle but i still get hurt but i can walk threw it...its also amazing after evertime i get hurt my scars go away and my skin tone goes bak to normal no one at school even knows i have it i wear a jacket all the time, just incase i dont have to.....the only thing i dont like about it is when u get hurt on your head and u get a lil bald spot but mine isnt visible

[natalie22p]

hey i am also diagnosed with EB its a killer!!!!!! i never get a chance to run and play with my friends i still am able to do a little bit of sports since mine are started to grow out. i have simplex and when i cannot walk i just sit on my wheel chair

[Delana4ever]

A ery good friend of mine has EB, he's only 11 and he will never know what its like to play tag, or jump in a pool. I complain about having to do PE, but when i saw this....i feel so horrible for complaining because i am able bodied and healthy...

[Selfy2k10]

i have got eb its verry painfull but ya learn to live with it :) x

[Darkanihilation]

lucky for me i just have it on my feet.... id be dead by now if i had it on my body..it still hurts like hell!!

[PortiaOfBelmont]

Unbelievable that we spend millions of dollars and hours making people feel insecure about the shade of their skin, the occasional pimple, the laugh lines that come with age and experience, when little children have to suffer from debilitating conditions like this. (And probably get turned down by insurance companies, hmph!) I think we need to take a collective look in the mirror and think about what we've done to relieve the suffering of our fellow Homo sapiens and stop being so superficial.

[mkdray224]

i have EB... its mild only on my feet where i walk... it hurts really bad... i just hope my kids dont get it from me.. but i just keep on keepin on

is it true that it gets worse through the bloodline?

[RougeRoks]

Everyone I know cries when they see this video. Including me. I lost my 3 year old cousin to EB. :,( Her name was Alisha, and she was the sweetest little girl...

[BidKamen]

i have a milder form of eb :( im now deciding weather to have kids or not when im older because i dont wanna put them through the pain but i really love children im 13 and dunno what to doooooooooooooo

[RougeRoks]

@BidKamen At thirteen, you shouldn't be worrying about that. That's far in the future. :) And you could always adopt. ^^

God bless you and your family!! (;

[2323littlegirl]

My heart goes out to all who have or have a loved one who suffer with this condition. May God be with you all.

[CuteLiliGirl]

RIP Jonny Kennedy, a wonderful man who was taken by this disorder.

[JoeEkDukor]

What pain. Shame on people who are blessed with good health and take life for granted. god bless all those children and may he cofort them in their pain.

[tonum244]

If anyone ever wants to talk with my brother or sister concerning EB please let me know. They both have lived with EB ,are aldults now and live in the U.S. My little brother did pass away from this years ago. Please don't be weary in wanting to talk with them,I'll give you their #. God bless you

[JyrTwinz]

I take life for granted too often, love the life you are given. Someone always has it worse. I'd love to change the life of someone with EB.

[JULESANDCLEO]

Hi Tilly, don't let the bullies get to you, you are a stronger person than they are. Kids tease about things they are scared of or know nothing about.

I wish you loads of the best of everything for the future

[heatmiser86]

This video and disease is heartbreaking, I can't imagine living with EB, or having loved ones with EB. I have an 8 month old daughter...watching this makes me think what it would be like if she were to suffer from this. My heart really does go out to these kids and their families.

[2004joyce2008]

i have a 4 months old son he has junctional EB type herlitz the docs saying he,s gone die before he 6 months old is .. i,m gone try to have a very nice time with him .this disease is really bad .its breaking my heart every day !!! i wish they found something so we kann fight a war to this disease

[R2k443]

A friend of mine had a nine month old son with a bad case of EB and recently died because blisters broke out in his esophagus. Nothing could be done and the baby died peacefully surrounded by his family and parents.

My mom looked into EB and I looked into it a few days ago. Its really sad to watch a child and even a baby go through that pain. My heart goes out to those that have EB and I hope one day a cure can be found.

[2004joyce2008]

deze ziekte is gewoon diep treurig , omdat er zo weinig over bekend is , ik zelf heb een zoontje van 3 maanden oud en bij hem is junctionele epidermolysis bullosa / type herlitz vastgesteld bij deze vorm van de ziekte komen de kindjes voor hun 2de levensjaar te overlijden !!! dus mijn motto is ,LEEF VAN DAG TOT DAG JE WEET NOOIT WANEER HET VOORBIJ IS !!!!!

[PortiaOfBelmont]

@2004joyce2008 je hebt veel moed

[2004joyce2008]

@PortiaOfBelmont hoi , dank jewel voor je reactie , helaas is de kleine man op 6 oktober 2008 overleden hij is op 2 dagen na 5 maanden oud geworden !

deze ziekte is gewoon oneerlijk en ik gun het niemand ...

ik mis hem nog iedere dag , hij was een heel dapper mannetje ondanks de pijn en alle ellende wat deze ziekte met zich meebrengt .

groetjes joyce mama van jermey*

[MinaMcKay]

Thats just heartbreaking..

[paddack2029]

I feel absolutely terrible for those people. The pain and agony that they go through makes me want to cry, and i can't even imagine feeling the pain that they go through. these people are true fighters, and i think everyone should know about how horrible this disease really is!!! people today are just way to selfish, and i wish that they would think about the suffering peole for once and not how much their nails cost or how much they spend at Starbucks everyday!!!!!

[tinbin131]

I have never heard of this disease, until I was looking for something to do my research on for school. I think this is perfect. nobody knows about these differ diseases, but i am going to make it well known. I would like to get a copy of this video to share with the class for them to actually see, along with the knowledge i give them. I am also going to ask them to go to the website to donate for further testing to find a cure. god bless you all. give him a butterfly kiss from me...

[salsastevenzoe]

I found out about EB 8 months ago when my girlfirend told me about it.

I own an estate agency and since researching it, we now donate £100 of every fee we make to DebRA.

A very worth while charity. Keep up the good work in raising awareness!

[gnarlyboy5]

good video

[central100]

GREAT VIDEO!!

[Geogal2626]

This is great, really inspiring seeing as my sister has this disorder. I was wondering, could I put this on my site?