Epidermolysis Bullosa (EB) Awareness video (extended)

Epidermolysis Bullosa Awareness video.
For more information about Epidermolysis Bullosa, please visit
http://ebinfoworld.com
PLEASE NOTE: Any hateful, crude, insult-filled comments will be deleted. Show some respect, Please. Thank You.

Category:

People & Blogs

Tags:

• EPIDERMOLYSIS
• epidermolysis
• Epidermolysis
• Bullosa
• BULLOSA
• Disease
• Disorder
• Cure
• awareness
• skin
• EB
• butterfly
• children

[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!

[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.