Epidermolysis Bullosa Info & Awareness
It is excruciatingly hard to feed a child with RDEB (Recessive Dystrophic EB). The mouth, throat and esophagus are prone to blisters, which, in turn, can and will produce scar tissue-enough to obstruct the passage of food through the esophagus. Because of this, RDEB children and adults can only eat mushy or liquid foods-or, at…
Collected by Melanie (Logan) England unless otherwise noted We all know how hard it is for EB patients to get enough calories and protein into their diet, especially when they have esophageal complications and require a soft diet. Here are a few recipes that have worked well in our home. Homemade Spaghetti-Os 2 cups cooked…
By Lorraine Spaulding The following illustrations are an example of a hand wrapping technique found to be helpful in the protection and preservation of RDEB involved hands. The instructions are for very small hands and some adjustments probably need to be made for larger hands. Lorraine also have some suggestions if anyone is having trouble…
By Sheri Coil – with the assistance of Brandi & Alex The arms are all wrapped and the under-prep is done; the creams, ointments, lotions and potions are on, the non stick dressings are applied… and we are ready to start the torso. Picture of just arms done, bare torso We start with a 4″…
By Sheri Coil – with the assistance of Brandi The following is the way we wrap the hands (and arms while we are so near) to reduce the mittening deformity that RDEB causes. After cleansing and debriding I use a lot of Alwyn cream or what ever else I have used before it came along. …
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 Denise Ippolito Dandurand As the mother of a child with EB, I can tell you first hand what this disease does to people. My son, Hunter Dandurand, is 2 years old and has Recessive Dystrophic Epidermolysis Bullosa (RDEB). Being my first, and only child, I wasn’t sure how parenting was going to be, but…
By Heather Wagner Brittany is the girl farthest left in the picture and I am the farthest right. The girl in the middle is our youngest sis Allison ——————————————————————————– The biggest influence in my life is my sister, Brittany. My sister is three years younger than me, but she teaches me more about life…
By Brenda Gionfriddo The day was May 11, 1999 I was excited yet scared for what was to come. I was scheduled to go into the Hospital at 7:00 p.m. to be induced. I was two weeks over due and ready. In only five short hours the said ” It’s a boy”. I was overjoyed;…
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…
