Tag Archives: Article

Helping Kids Cope

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CLICK HERE for the Spanish version Epidermolysis Bullosa, EB, is a very difficult condition to live with, even with the mildest forms. These are things of outmost importance in helping your child coping with EB:  Accept the EB and accept your child for who he is. This sounds simple, but it’s not. There is a…

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Common Misconceptions about EB

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Through the years of running this website I’ve been asked questions about Epidermolysis Bullosa that follow in the category of misconceptions. People believing some things regarding this condition that are false. This is not only from strangers, friends and family, but from the medical community, as well as actual EB patients and parents. I’ve asked…

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Life with Andy

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By Mary Jo Burgy December 30, 1993 was the day we had been longing for. This was to be the birthday of our twin boys. We were as excited as we were scared. I had the “perfect” pregnancy. I gave up all the bad stuff and ate all the good stuff. All the tests indicated…

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Making Goals and Dreams Come True

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By Bruce Gunn As printed in the Summer 2000 issue of DebRA Currents Bruce Gunn in February 2000 in DisneyWorld during the ‘Have a Heart for EB’ family event.   During my teenage years I knew I was beating the odds given to me at birth. With every birthday I was achieving the impossible. In…

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Leo

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By Debbie Kay Hatley In search of a new pair of eyeglasses, I entered a well known optical shop. It wasn’t very busy perhaps a handful of customers, one or two were being fitted with their new prescriptions. I began browsing through the assortment of frames this shop had to offer. In the process of…

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About Eddie Paul

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By Helen Kling We would like everyone who is affected by Recessive Dystrophic Epidermolysis Bullosa to know our son Eddie Paul.  This is very much a success story, and hope that by sharing this, i