This is Herlitz-Junctional Epidermolysis Bullosa. H-JEB. Epidermolysis bullosa, EB or Butterfly Disease is know as the worst disease youve never heard of! This disease causes the body to not produce a protein that it needs to hold the skin together, kind of like the missing layer of glue in between the layers of skin. Not only is the outside of the skin affected, but the inside as well. EB is a 1-in-50,000 disease, and just gets rarer by the type of gene mutations. 85% of children with EB will not survive past a year old, and the other 15% will endure agonizing dressing changes, agonizing pain in doing what most normal kids have no problem doing, long stays in the hospital, almost always a gravity-fed feeding tubes, traches, weelchair confinement, and having to take pain medicine just to take a bath. There is NOT A CURE. There is NOT A TREATMENT. We need to help find a cure, no child deserves to live like this. #Hope #Love #Cure #EB #StopEB
Posted on: Thu, 01 Jan 2015 22:13:12 +0000
Trending Topics
Recently Viewed Topics
© 2015