Epidermolysis Bullosa Info & Awareness
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…
I cannot stress enough how important it is for family to support the new parents at this time. This is a frightening time for the new parents and they often wonder how their family will treat the new baby. Showing how much you love them and their new baby will help to alleviate these fears;…
By Sheri Coil Reservations: When making your reservations, explain about your situation and EB and ask to reserve the bulkhead seats where there is more room. Pre or Early Boarding: Most all airlines provide for early boarding for the elderly, babies and the handicapped, but not all do this automatically. With some airlines you have to…
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…
Epidermolysis Bullosa: A guide for parents, schools and playgroups Published by: DEBRA (UK) April 1995 Download the PDF from the Debra International Website HERE Another Pamphlet you can print is available at the Debra US website HERE INTRODUCTION: This short booklet is intended to be a guide for parents and schools on the issues to…
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…
