Living with Epidermolysis Bullosa has first-hand accounts written by parents and patients who are living or have lived with EB, and was compiled to help people in general understand how it is like to truly live with every form of Epidermolysis Bullosa; from the milder Simplex variants, who are nonetheless not simple to live with, to the more lethal, namely Junctional, whose patients usually succumb to before their first birthday. The stories you will read are from proud parents, or patients and their struggles and how they are coping. Some stories are sad, some are encouraging, and everything in between.
Silvia Corradin is a Writer, Activist, Web Designer, Photographer, Graphic Artist, Author of a Biography in Italian, a Translator, but first and foremost a Mom.
Her special need child, her much loved Nicky, suffers from the Recessive Dystrophic form of Epidermolysis Bullosa. His skin is so fragile, the minimum scratch will result in a 2nd degree burn like wound.
She is currently writing a book about her experiences in an effort to help others which will be published shortly after Nicky's 18th Birthday in late 2014.
She has also lost a child at birth from this condition.
She works actively in raising awareness for her son's rare condition and is the founder and webmaster of the ebinfoworld.com website, which is a help site with personal stories and a wealth of information for patients and caretakers. She was born and raised in Italy, and moved to the US shortly before her 18th birthday and stayed with her aunt while going to school before venturing out on her own. She resides in Lancaster, California.
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