What is EB?

Epidermolysis Bullosa is a painful, life threatening disease of the skin. Sammy has the form called Recessive Dystrophic. In his case the bottom layer of his skin does not adhere properly to the other layers because the collagen 7 protein involved in this function is either missing or mis-shapen.
Because of this genetic defect even slight friction can cause several layers of skin to rip away creating horrific, painful wounds. Normal daily activities can cause blistering or tearing of the skin. Currently there is no cure for EB, only wound management as treatment. Despite the challenges Sam faces with EB, he displays amazing strength every day and inspires those around him.

Friday, October 26, 2012

It is EB Awareness week 2012. Sam took awareness bracelets to school today and they sold 100 of them to help fund research. We are so thankful for the support of his wonderful classmates! We have more available if you would like one. ($2 ea)
We still do not have a cure for this horrible disease but hopefully it will come soon with more awareness efforts to fund research.
Thank you for coming to this blog and learning more about EB. It means the world to us!

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