Butterfly Talk

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.

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 portrait of then-16-year-old Nicholas Zahorcak, who has a rare genetic disorder called recessive dystrophic epidermolysis bullosa where the skin is so delicate any type of friction can cause blistering.  Jodi's latest project is an exquisite in-depth look at our Veterans, as she traveled across the country collecting their stories, valuing our nation’s history from those who actually made it. “Diminishing Generations” is a personal interactive adventure in book and video in a high tech presentation never done before.   The books are available for purchase on Champagne's website at www.jodichampagne.com. Part of the proceeds from "Courage Under Wraps" will go to th

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 regarding the condition and perhaps clear up some misconceptions. It is estimated that about 10,000 Americans, mostly kids, have some form of EB. With modern medical care, some with the worse kinds of EB can live into their thirties. Unfortunately, by this age most will succumb to a particularly aggressive skin cancer (Squamous Cell Carcinoma) that is somehow touched off by EB. Of these 10,000 effected, less than 300 have the same kind as my son Nicky (he has the Hallopeau-Siemens subtype, also called Severe Generalized), making the RDEB form so rare than only one out of every one million babies is born with it.

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. Jakub Tolar.

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 suffering as a result of the arrogant, ignorant FL drs who refused to learn about EB I am 42 yrs old and have Recessive Dystrophic Epidermolysis Bullosa. My subtype of RDEB is Inversa, an extremely rare subtype of RDEB. I am externally affected by this subtype of RDEB but my chronic areas are mostly where skin rubs/meets skin. I am more affected internally (oral, esophageal, GI etc...). As a child/young adult, I was active in choral groups, ballet, gymnastics and track but not without injuries. I kept trying and pushing myself until my 2nd year of track in high school. Ultimately, I did quit track as a result of falls that caused severe damage all over my body which

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 her first two children's painful and short lives. In her second book, "Walking the Mile", she attempts to resume her life with a new husband, a new town, and a new baby. She describes her journey through the struggles with undiagnosed and stigmatized mental and physical illness, resulting in addiction, alcoholism, and the abandonment of her family and society as a whole. And finally--the light at the end of the tunnel.

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 Dystrophic Epidermolysis Bullosa. Nicky is 18 now and the struggles and pain he's been through are immense. Does she dare hope for a future for him? Yes. But it's not easy.  

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 my arms, my hands may look like fists and it may take an extra dose of creativity when accomplishing certain tasks, but I wouldn’t trade my life for anything. I love my family and friends, I love cooking in the kitchen, dancing, music, movies. I am a writer and an artist. I am strong, secure and not afraid to stand up for what i believe in"

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/

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. http://www.montellofinefoods.com/

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 podcast in conjuction with the upcoming release of my book "Butterfly Child", my journey from the stillbirth of my first son Alex, followed by a miscarriage and the birth of my son Nicky and what life has been like for him and us for the past 20 years.