Through The Eyes of Jesus: EB Awareness Week

Wednesday, October 26, 2011

EB Awareness Week

This last week of October is officially EB awareness week. Many of our EB friends have posted so many moving posts in their blogs and on Facebook that it leaves me speechless
(enjoy it - it doesn't happen often).

We have so many EB friends, each has their own personal story and they are all important to us. I really didn't want to pick one story in particular but decided to share Courtney and Tripp's story.

Tripp has a different form of EB than AJ and he has suffered so much in his short life. Tripp's story can be found Here. Please take the time to check it out and learn more about Epidermolysis Bullosa. After reading their story, you will not only understand EB but you will be compelled to pray for he and his Mom.

Thanks for caring,

Barbara

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What is Recessive Dystrophic Epidermolysis Bullosa?

It is a rare genetic disorder that causes AJ's skin to blister and tear with the slightest friction or contact. He can have severe blistering anywhere on his skin. Internally his mucus membranes and organs are affected. Due to blisters in his mouth and throat, he eats very little by mouth and receives his primary nutrition through a gastrostomy-jejunostomy tube (G-J) that is placed in his stomach and small intestine. He struggles with breathing at times as blisters form in his mouth, throat and upper airway. There is no cure for EB. AJ will live with constant pain and scarring. With each tear to his skin, the skin scars and eventually limits his movement. His fingers and hands will begin to fuse and curl together. The only treatment for EB is daily wound care and bandaging. Each day we unwrap his body, bathe him, treat his open wounds and then wrap him up all over again. AJ has many medical providers that help us with his care. He has a power chair that he uses in the community to reduce the friction on his feet. He also takes many medications to reduce the acid reflux that damages his esophagus and to help with the intense itching that EB creates. Children that do not succumb to infection, malnutrition or airway complications develop an aggressive form of skin cancer in their teen years. Children with AJ’s disorder are often referred to as, “Butterfly Children” as their skin is as fragile as a butterfly’s wing.