Epidermolysis Bullosa Info & Awareness
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…
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…
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…
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…
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…
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, it will give others inspiration as he gave to all who knew him. We already had a little girl who was…
By Sheri Coil A bit of History Shortly after Christmas one year, we received a phone call asking us if we were interested in caring for two little boys with a very rare disease that affected their skin. We are caregivers to medically fragile children and like to care for those with ‘challenging’ conditions. The…
Bathing Bathing can be a good way to cleanse wounds because you can add different things to the bath water. Some patients bathe while others shower or do a combination of both. These are some of the things people use in their baths to help with infections: Aveeno Oatmeal bath – Aveeno Daily Moisturizing Bath with natural…
By Melanie (Logan) England (this information formerly on the EBmommas website) Ignorance is not bliss. 90% of Epidermolysis Bullosa related claim denials from insurance companies are due to ignorance of this rare disease. As if you did not have enough to do, it is now your job to educate them on EB. People who have…
By Melanie (Logan) England Dealing with Epidermolysis Bullosa in the Education System Letting go can be two of the scariest words in the dictionary for the parent of a child with Epidermolysis Bullosa. But eventually the time comes that our children are ready for a formal education and we have to consider the idea that…
