Epidermolysis Bullosa Info & Awareness
Shirley, grandma and caregiver of Jennifer, an RDEB patient, shares her hints and tips and her knowledge about EB care with us. Constipation Hi all, I found this article in a pamphlet put out by dEBra International in their Nutrition section. Thought it might be helpful: Constipation in babies and young children is often the…
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 Grammy Shirley December 23, 2002 This is information regarding Jennifer Deprizio’s many hand surgeries. Before Jennifer came to live with me in 1997, she had been through many hand surgeries to open the digits and to keep her hands from mittening. Jennifer’s hand before surgery None of them worked and the reason for this…
by Silvia Corradin My story on how I came to care for my son started, as with all RDEB babies, when he was born. Since he was c-section he came out perfect except for some problem with his mouth. The nurses sucked all his skin out of his mouth when they did the routine suctioning…
By Melanie (Logan) England (this information was previously posted on the EBmommas website) The Dystrophic and Junctional forms of Epidermolysis Bullosa are notorious for causing deformities in the enamel and dentin of the teeth, but people with all types of EB are prone to dental decay due to oral hygiene complications. Blistering in the oral cavity,…
This page was put together with the aid of a little booklet distributed by DEBRA UK called “Care and Management of Children with Dystrophic Epidermolysis Bullosa”. Because of the rarity of EB, many parents have not been helped by the medical community, and hospitals have even injured these children by applying tape, bracelets, sucking the…
