Epidermolysis Bullosa Info & Awareness
Thick Skinned by Dan Cogliano About the Author Dan Cogliano was born with a condition (yes, Epidermolysis Bullosa) that in some people makes even the touch of another human or drink from a glass of water a potential cause for medical treatment. But Dan’s perseverance in the face of this malady paid off big time. First, as an…
Apparently the daily life of my son is offensive to Facebook and whoever ‘reported’ this photo to Facebook as a violation of the statement of rights and responsabilities. Huh? No, this photo isn’t pretty. That’s the point of posting it, isn’t it? To SHOW what EB is really like. To show the suffering EB patients endure. We’ve…
Incredimail is a FREE graphic email program and you may download it HERE… http://www.incredimail.com/english/download/ Please Respect the Creator and do not tear my work apart to make Tags or Letters for IM or OE or others and claim as your own. Stationary Shared, Images are not. Images are from the www or stated. No Copyright…
Here are some blinkies free for the taking. You do not need to link back to ebinfoworld.com, but, of course, it would be nice if you did 🙂 NO DIRECT LINKING PLEASE!! Simply right click and save. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ The following blinkies are also free for the taking, but since they were made specifically for this…
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…
For more information or to Order the book, simply click on the title. Jonny Kennedy: The Story of the Boy Whose Skin Fell Off (Paperback) by Roger Stutter (Author), Nell McAndrew (Foreword) Jonny Kennedy was the star of the unforgettable Emmy award-winning documentary The Boy Whose Skin Fell Off. He was an extraordinary character determined…
For more information or to Order the book, simply click on the title. Unconditional ~ Uncensored (Paperback) by Marybeth Sheridan An unflinching personal memoir of a mother’s journey as she discovers her spirituality and strength while watching her child endure a devastating disease called Epidermolysis Bullosa. Her journey takes her through the twists and turns…
This is my book!! It’s basically a compilation of columns I wrote in the early to mid 2000s. “Special Mommy Chronicles” was a featured site in Exceptional Parent Magazine‘s February 2003 issue. It was also featured as an on-going column in the Mahoning Valley Parent Magazine of Ohio from April 2003 to September 2004. Over twenty…
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…
