Butterfly Talk Silvia Corradin

Dealing with Anemia with Epidermolysis Bullosa - A general and personal experience with the Recessive Dystrophic form

Lots of Information about Epidermolysis Bullosa from the ebinfoworld.com website

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 the Director of the Student Success Center and an Adjunct Professor at Anna Maria College. In addition, Dennis is a special education department head at South High Community School in Worcester, MA. He lives in Worcester with his wife, Kerri, and his four children. 

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 reference, that blog is here - >http://blog.silviaskingdom.com/?p=1137

Thank you for listening!

Silvia

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 the Children's Skin Disease Foundation to raise funds for research for the treatment and potential cure of several skin diseases that affect children. 

In 2001 Tenconi established Camp Wonder as a summer camp for children who suffer from skin diseases in order to give them the sense of normalcy and the normal experiences that children have during the summer.

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 taken his talents to local business and restaurants across East Texas and is auditioning for America's Got Talent later this month.