Dealing with Anemia with Epidermolysis Bullosa - A general and personal experience with the Recessive Dystrophic formBy Silvia Corradin

Lots of Information about Epidermolysis Bullosa from the ebinfoworld.com websiteBy Silvia Corradin

Dennis Vanasse is the author of several children's books, including "Everyone Belongs," which is about a young boy who has Epidermolysis Bullosa. Dennis' passion is working with special needs children. His children's books help children deal with major life obstacles. All of the books promote awareness which leads to acceptance. Dennis is currently…

Epidermolysis Bullosa is a rare genetic skin condition-not only it's rare so people in general are not aware of it, the way it manifests itself and how it's inherited is very confusing. In this Podcast I will attempt at explaining EB in the most layman's terms. I did the research for this particular podcast a year ago and published as a blog for re…

In 1996, Francesca Tenconi was diagnosed with Pemphigus Foliaceous, a life-threatening auto-immune based skin disease. She and the other children she met while receiving medical care felt isolated and had no organization focusing on the unique challenges faced by children with such visual diseases. On her 16th birthday in 2000, Tenconi established …

Kenny Breaux's son Davion has Recessive Dystrophic EB. Davion, AKA, "D-Money," is dancing to a style of music called dubstep he taught himself by watching YouTube videos. But, Davion isn't just dancing for fun, he's raising awareness for EB, or Epidermolysis Bullosa. Kenneth and his son call themselves "Dubsteps Underground, the Mob." Davion has ta…

Photographer Jodi Champagne lives in Palmdale, California, and her goal is to tell a story, raise awareness, make a difference. She has traveled worldwide to capture humanity with compassion and heart. Her photographs have appeared in National Geographic and Sports Illustrated. Champagne's first book, "Courage Under Wraps," was a day-in-the-life po…

Epidermolysis Bullosa is a rare genetic skin disorder. One thing to describe its rareness is that a doctor or a nurse can be working a lifetime and never bump into this condition. Because of this, there is a lot unknown about the condition and most Doctors are unfamiliar with the condition. I will try to answer some of the most common questions reg…

In honor of EB Awareness week today we'll be joined by Christie Zink, founder of "I Refuse EB" and her efforts to raise Awareness and funds to find a cure for Epidermolysis Bullosa. irefuseEB.org was launched in 2012 to help raise awareness for EB, promote advocacy and support the research efforts taking place at the University of Minnesota by Dr. …

About Jennifer in her own words: My name is Jennifer (Lyric) Bolles. I was born in FL and have lived in many different states throughout my life. Currently, and indefinitely, I am in Cincinnati, OH. I moved here almost 6 years ago for the EB drs at Cincinnati Children's Hospital and Medical Center's (CCHMC) EB center. My health was drastically suff…

Jessica Kenley was born in 1981 in Buffalo, NY. She lost two of her children, Ethan Tyler and Kaylee Marie, to the Junctional-Herlitz subtype of Epidermolysis Bullosa during their infancy. She is a licensed veterinary technician and has since had 3 healthy children. She wrote the book "Kidowed" to describe the struggles, sorrows, and triumphs of he…

The Host of the Podcast Silvia Corradin talks about her book "Butterfly Child: A Mother's Journey", her other books, websites etc. Just before her 30th Birthday, Silvia found out she was pregnant with her first baby, which was stillborn at full term on March 1, 1995. After a miscarriage she had Nicky, diagnosed shortly after birth with Recessive Dy…

Special guest Derra Nicole Sabo is 30 years old and lives in Apple Valley, California. She was diagnosed at birth with Recessive Dystrophic Epidermolysis Bullosa. She loves to write and has published a few books about her life. Join us as she talks about her life, living with EB! In her own words: "I may have bandages on my legs and occasionally on…

Special Guest Heather Fullmer talks to us today about being an EB mom and shares about what it means to her to be one of the founders of the EB Research Partnership. http://ebresearch.org/By Silvia Corradin

Special Guest Lorraine Montello talks to us today about being an EB mom and shares details about her business venture, Montello Fine Foods, which she started with her son Garrett. https://www.montellooliveoil.com/By Silvia Corradin

A quick podcast to test the waters, explaining why I decided to start this and what Epidermolysis Bullosa is in general and what my son goes through on a daily basis. My son Nicky has the Recessive Dystrophic form of EB. This blog talk radio podcast will feature guests and will be a permanent part of the ebinfoworld.com website. I start this podcas…