Epidermolysis Bullosa Info & Awareness
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…
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,…
Where to Start, Where to Stop and What the Future May Hold By Daniel Mark Siegal MD, MS Associate Professor, Vice Chair and head of Dermatologic Surgery, Department of Dermatology SUNY@Stony Brook INTRODUCTION: Skin cancer, predominantly Squamous cell Carcinoma (SCC), is a scourge of RDEB. This is a problem that begins with the first blister,…
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,…
Meet The Parents In the late ’90s and early 2000s this website had a recurring ‘featured’ parent. While we no longer do that, the featured parent and their stories are still available to view. God Bless them all. Happy Mother’s Day! Melissa & Greg Gray Molly Barber Tammy Bradley Mary Jo Burgy Sheri Coil Silvia…
In the late ’90s and early 2000s this website had a recurring ‘featured’ patient. While we no longer do that, the featured patients and their stories are still available to view. God Bless them all. Brogan Ayre Rachel Barber Christopher Bradley Jeffrey Thomas Bradley EmmyLou Carouthers Lizie Fernandez Jonathan Gionfriddo Sophia Maria Litynski Dennis Parlevliet…
