Living With Epidermolysis Bullosa

Dealing with a skin condition that barely anyone has ever heard about with endless doctors visits and co-pays, medications that have side effects like weight gain and nerve damage, the stares and looks, the helpless feeling about your own child, the sheets and clothes covered in blood and skin, insurance companies, creams and pills, wound care, pain management, bleeding, bandaging and people that say mean things to him are what we and other EB families deal with everyday.

EB is an inherited genetic condition and Hunter was born with this, but Doctors tell us Hunter’s condition is life alternating not life threatening. Hunter’s has developed many more lesions since first finding out he had EB, in 2011. Hunter has lesions from his neck down. Itching, open sores and sleep are the major issues we are dealing with right now. He can’t sleep and stay asleep due to the itching. Hunter can do most things other kids can do and when he can’t, we find something else.

Having EB in our lives has challenged us many times and EB hasn’t won a warm and fuzzy feeling in our hearts, not sure it ever will. There are children with EB that are born that don’t get to celebrate their 1st birthday or 2nd birthday. We take every day as a gift and run with it. Hunter has been through a lot, but it has not stopped him. His smile is contagious and we are so proud of Hunter, he is one amazing, funny & brave kid!


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