What is EB?
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.
Sunday, August 8, 2010
Sammy will be five this Sept. I remember telling people that I expected they would find a cure by the time he was five. Well, we are not quite there. This makes me real sad but I am thankful that Sammy has a strong spirit and is thriving in spite of this horrible disease. I hope and pray someday that Sam and all the other EB children could experience life without pain. I know God loves Sammy and I will leave him in God's hands to comfort him and give him the strength he needs to get through each day.