Epidermolysis Bullosa Info & Awareness
By Silvia Corradin From: Special Mommy Chronicles (Unpublished Column from December 10, 2006) A couple of weeks ago my son turned ten years old and it felt like a gigantic milestone. For the first time in years the image of him in the incubator when he was a baby kept haunting me and my dreams. Why did I…
By Emily Spurrier From her Blog: Dys-Located This is the third in a blog series on Epidermolysis Bullosa (EB) as part of EB Awareness Week (October 25-31). *************************** My mother turned 28 on October 25, 1974. On that same day, she received a phone call advising her that her one-week-old infant would only live for…
Written by an Anonymous RDEB Patient I have had these issues since birth and have tried a myriad of medications that have been prescribed or suggested by prior physicians. The list includes mineral oil, senna products (liquid and herbal tea) ex-lax, milk of magnesia, dulcolax, docusate sodium, Metamucil, Miralax, Benefiber and many others that I…
Around 2004/2005 a poll was posted on this website to ask various questions such as where they get bandages, if they have help etcetera. Here are the results of that survey. The vast majority of people that have answered the survey stated that one of the parents is home full time and does all the…
CLICK HERE for the Spanish version Epidermolysis Bullosa, EB, is a very difficult condition to live with, even with the mildest forms. These are things of outmost importance in helping your child coping with EB: Accept the EB and accept your child for who he is. This sounds simple, but it’s not. There is a…
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…
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 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…
