Epidermolysis Bullosa Info & Awareness
This is my book!! Butterfly Child: A Mothers Journey by Silvia Corradin “Children with EB are called “Butterfly Children” because EB is described as a skin condition in which the skin is so fragile, it is like butterfly wings.” Like any mother, Silvia never imagined she would have to to bury her first son, Alex, who…
For more information or to Order the book, simply click on the title. Everyone Belongs by Dennis Vanasse M. ED. Meet Ryan. He is just like you and me, except that he suffers from a rare skin disorder called EB. Because of this disorder, Ryan experiences painful blisters, his skin peels off, and infections occur…
For the past year my new friend and fabulous photographer Jodi Champagne, has been documenting my son’s life as it is. My son’s name is Nicholas Zahorcak, we call him ‘Nicky’. He was diagnosed shortly after birth with the Recessive Dystrophic form of Epidermolysis Bullosa. Jodi photographed us doing bandage changes, during trips to the various…
Being born and living with E.B. is one heck of ride, never a dull moment. My inspiration for this book was my family, no matter what I’ve been through or what I’ve wanted to do in life, they have always been there for me. I am a young independent woman because my parents allowed me to…
Kidowed is an e-book available on Amazon.com about a mother who had two children afflicted with the fatal Junctional-Herlitz subtype of Epidermolysis Bullosa. Her story is one of tragedy and loss, but also hope, victories, and humor. The book was originally written as a journal, and has remained in that format. The author, Jessica Kenley,…
The Official Patient’s Sourcebook on Epidermolysis Bullosa: A Revised and Updated Directory for the Internet Age This book has been created for patients who have decided to make education and research an integral part of the treatment process. Although it also gives information useful to doctors, caregivers and other health professionals, it tells patients where and how to look for…
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…
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…
