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.

Friday, November 13, 2009

About Sammy


Sammy is 4yrs old and a typical boy in many ways:
He loves to run and play rough ( but knows better most of the time).
He loves Soccer, baseball, football, cars & trains.
Dancing comes naturally and he will dance as long as his feet will let him and then some.

Sammy's fragile little body works hard everyday to keep up with the tough spirit within him.
I have never met a person as tough as Sammy!

Thursday, November 12, 2009

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. Further genetic testing will determine whether he has the protein or it is deformed.
Because of this genetic defect ANY friction however slight can cause several layers of skin to rip away creating horrific, painful wounds. Daily activity also creates giant blood blisters as the skin detaches from the rest of his body. These blisters will continue to grow as they pull on the skin unless they are popped with a sharp needle.