Epidermolysis Bullosa Info & Awareness
By Jen O’Neil I got some good gossip the other day, and I got that excited feeling in the pit of my stomach and all I could thing of was…Oh man wait till Ryan hears this! Then it hit me, and the excited feeling in the pit of my stomach turned to lead. And I…
By Lorraine Cameron The first Ever “EB family reunion” at Walt Disney World got off to a great start this past Valentine’s Day, especially due to Disney World’s having such a BIG heart for EB! Walt Disney World not only donated all the park passes, but they provided us with a private character greeting with…
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 Jennifer Kirk Deprizio Once upon a time. There was this baby girl that was born in 1979 in Wilmington Delaware. She had all of her fingers and toes, but there was something not right with her skin, because she had no skin on her left leg and also no skin on her stomach, and…
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…
Most patients with Recessive Dystrophic Epidermolysis Bullosa are also Anemic. Anemia in EB is caused by many factors and can become very severe if not treated. Anemia means not having enough red cells and hemoglobin. This can occur because they’re not produced, or are being lost and destroyed. Anemia can lead to low oxygen levels,…
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…
