[Video 1] My Lyfe and Living with Epidermolysis Bullosa
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Uploaded by truesoldier2006 on Feb 1, 2007
EB is a rare and very painful skin disorder called Epidermolysis Bullosa. Its where the first and second layer of our skin isnt bonded so when friction comes in contact with our skin the fluid from our bodies form blisters...THERE IS NO CURE
SO PLEASE HELP SUPPORT AND SPREAD THE WORD..
JOIN MY GROUP PAGE ON FACEBOOK..
'The Butterfli Children'
FOR MORE INFO ABOUT E.B. GO TO:
http://www.debra.org
http://www.ebanusa.org/
Uploader Comments (truesoldier2006)
All Comments (21)
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@truesoldier2006 she had recessive eb... my mom and dad both had the recessive gene and they had a 25% chance of having a child with eb... my older sister was their first child...
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my wive has EB she is 30 and we have a 8 year old girl with no EB , but we have a son who is nearly 2 and has EB,
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all great warriors go throuh the worst of times. to be a warrior you must feel the hurt of another to show heart but also show weakness. but like the songs says the words cannot and willnot bring me down. FIGHT ON SOLDIERS OF FORTUNE AND FIGHT FOR A BETTER DAY NOT ONLY FOR YOU BU FOR THE OTHERS IN NEED OF HELP!!!!
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I too have a daughter with eb, she is 31 yrs. old,married with a 6 year old adopted son, the joy of her life..
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my older sister had EB... she died when she was 16...
Bitten2007 1 year ago
@Bitten2007 oh wow im sorry to hear that. Its a horrible disease. What type did she have??
truesoldier2006 1 year ago
u r truly making a difference in people that watch this video, i play video games all the time and cant imagine what it would b like not even holding a pencil, u r a real soldier fighting every day
juju2morrow 4 years ago
thank y0u
truesoldier2006 4 years ago
I have EB too and loved this video. Our two children (9) and (1) also have EB. We are currently looking for support for our daughter and came accross this site. Thanks for sharing!
RR/Seattle area
dylrave 4 years ago
Im 19 and have EB Simplex....your welcome
truesoldier2006 4 years ago