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.

Tuesday, August 30, 2016

Summer 2016 Update

Sam had the opportunity to attend Camp Wonder in California this past June and he loved it! Camp Wonder is a camp run by the Children's Skin Disease Foundation and invites children with all types of skin diseases to enjoy a week of fun. We are so grateful that he was able to have this experience and he is looking forward to attending again next year. Sam had a great summer and is ready to begin 5th grade! We are so proud of him!


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