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.

Wednesday, October 30, 2013

EB Awareness Night at Brewster High School!
Samuel's aunt Naly helped organize an awareness night at their girls volleyball game. All three of their teams wore green (Sam's favorite color) to support Sam. They also sold cupcakes and EB awareness bracelets to help raise money.  Great job Naly! We appreciate everything friends and family are doing to help spread awareness this week.

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