Epidermolysis Bullosa (EB) is a rare genetic disorder characterized by the presence of extremely fragile skin and recurrent blister formation, resulting from minor mechanical friction or trauma. This condition is not contagious but the skin of an EB patient can tear very easily. In the more severe forms these wounds are deep and leave scars that last forever. Theses scars lead to contractures and eventually make it difficult for them to walk and use their hands. Those affected by the more severe forms also have to worry about the development of a certain form of skin cancer. EB is a devastating physically, financially and emotionally. Those with EB live a life of pain, physical scars and financial hardship. Currently the only treatment for those with EB is to bandage the wounds to help prevent damage and infection. Most people with EB are bandaged from the neck down similar to someone with second to third degree burns.

My son Jonathan was born with the recessive dystrophic form of EB. This is the more severe of the 3 forms of EB. He was born in 1999, that day was filled with both joy and a lot of confusion. Living with him has been challenging but very rewarding.