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 the EBMRF (EB Medical Research Foundation) www.ebkids.org Proceeds from the "Diminishing Generations" books go to support the Gary Sinise Foundation.

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 took weeks to heal each time. It's one of the rare times in my life that I was truly emotionally devastated by having EB. I began working after high school in retail, food service, clerical positions and found my way to my true love, working with children, specifically special need children, typically ADD/ADHD, mental, emotional, behavioral issues, victims of abuse and neurological issues. I've been working in Child Development for almost 20 years. I am only able to work part time as a result of EB and Fibromyalgia so I typically work with private families who need PT or occasional care.