Emily's Story

This Article was written by
Emily from Toronto, Ontario, Canada  Age 12 who suffers from EB
for her school newsletter during EB Awareness Week October 24-30, 2005

 Epidermolysis Bullosa is a rare skin disease that many people suffer from. I bet you have never heard of it before because it is very rare, there is not much research being done because not a lot of people know about it.

 EB is a skin diseases that makes the skin cut and blister extremely easily, it’s because the skin doesn’t have elasticity that holds the skin together, (like glue) and without the glue the skin severs open. They call kids with EB “butterfly children”, because their skin is as fragile as butterfly wings.

 People with EB go through more pain in one day then you will probable go through your whole life. Some people with EB can’t even walk nor do anything with their hands, and we do so many things and just take it for granted. We also complain about silly little things that don’t really matter and there are people that have much worse problems and don’t complain at all, it’s a way of life for them. 

 If you have EB you live life in a different way, in one way it’s amazing because every thing you have you feel grateful for because you think more about what you have not what you don’t. But on the other hand it is painful and have trouble doing things, there are lots of disadvantages.

 This week please try to tell people about Epidermolysis Bullosa because the more people that know the more people might want to donate money for research or help out. With your help we will be able to win this fight against EB and help those children spread their wings and fly.

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