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…
Jodi Champagne, who is the photographer who documented my son Nicky’s life with Epidermolysis Bullosa, was recently interviewed by an online video magazine and this is the interview– read this. Get the Book exclusively at BLURB http://www.blurb.com/b/5024440-courage-under-wraps and on iTunes! https://itunes.apple.com/us/book/courage-under-wraps/id803462653?mt=11
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…
I wanted to take a moment and wish everyone HAPPY HOLIDAYS, and as a good catholic, MERRY CHRISTMAS! BUON NATALE of, course to my Italian family and friends. I’ve been a bit MIA on this blog, my apologies. I’ve been busy finishing up my book about the story of my precious son I lost due…
Hello everyone, just a quick notice! The Kindle editions of BOTH Living with Epidermolysis Bullosa and Special Mommy Chronicles are now available for the NEW low price of $2.99! Click the covers below to be taken to their respective page at amazon.com If you don’t have a kindle, the APPS are FREE for…
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,…
By Silvia Corradin From: Special Mommy Chronicles (Unpublished Column from November 7, 2006) “Don’t tell me that you understand, Don’t tell me that you know, Don’t tell me that I will survive, How I will surely grow. Don’t tell me this is just a test, That I am truly blessed, That I am chosen for this…
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…
