Tell Us What EB Means To You (page 5)

EB to ME

I was diagnosed with EB Simplex at birth - and my experience with EB has brought me down some extremely trying roads, but has also led me to so many things that I am grateful for. EB has provided me the opportunity to find the strength within myself to get through anything thrown my way. It has pushed me to feel proud, and more comfortable in my own skin than others without EB may feel. I can attest that it is easy to feel alone when you have such a rare disease. I wish that I were alone, and that no one else in the world had to go through the tribulations that EB brings, but unfortunately my wish has not yet come true. debra of America has helped to show me that I am not alone. Last year, I ran the NYC Half Marathon on behalf of debra of America. I also volunteered at the 2014 debra of America Patient Care Conference, where I met so many amazing people, with whom I share a unique quality, and a unique bond. I am so thankful for debra of America, for my parents, and for every parent that takes care of a child with EB. As difficult as it is to manage a life with EB, it is equally as frustrating and heart-breaking for our caregivers. I know that together, with our strength and tenacity, we will find a cure.
- Gabrielle Sedor (debra of America Young Leadership Committee)

#EBtoME is every day I wake up and check my daughter for wounds and fresh blisters. That's my life. It all started when my 4-year-old daughter Bayleigh was a baby. Bayleigh was a very happy baby and she hit all of her milestones until it came to walking and crawling. Then she started getting giant blisters on her feet, hands, and in her mouth. EB has been a huge battle for Bayleigh and our family, and I am fighting to try and find a cure. It was very hard to get Bayleigh’s school to accept her because they didn't think she was capable of functioning in school. But Bayleigh is a fighter. She fights to be happy every day and go to school and has recently started cheerleading. Currently I am running Bayleigh's Butterfly to help promote EB awareness and sell merchandise to raise money for debra of America. EB means life. EB is our life. I hope one day Bayleigh can live her life without the pain from EB.
- Ashley Templeton

#EBtoME is a beautiful baby boy in Weedsport, NY named Easton Friedel and the ugly disease that has taken over his body. It is also about the strength of a family and willingness of a community to come together to fight the fight and keep the hope.
- Michael Benny, News Anchor, WTVH-TV, Syracuse, NY

The first person I met with EB was Abbie Evans. I had never heard of EB, but I was briefed on the basics right before I met her. And to my surprise, the most noticeable thing about Abbie was not her skin or her bruises, but her warm smile and vivacious personality. EB was something she dealt with every day, but it never defined her or let it stop her from doing what she wanted to do. Seeing someone with such a fierce, unstoppable desire to live, redefined EB to me from something more than a disease, to an outlook on life.
- Jessica Miller (Editor of the documentary, "Butterfly Girl")

Epidermolysis Bullosa was first mentioned to me 15 years ago, as a distant relative gave birth to a daughter who was diagnosed with EB. To be honest, it was one of those things you are told about, empathize with, but without further discussion fades from thought. Four years ago, through my work, I came face to face with EB, and boy, what a wakeup call. I have had the honor since of meeting parents, caregivers as well as children and adults with various forms of EB. To answer what #EBtoME is grows in complexity each day, but I will try to touch on some of it. Priority -­ priorities change daily, hourly and minute by minute for us all. When I see the priorities of those with EB and their family around them, it gives a whole new perspective. Pain control, protection from injury, mental anguish and a host of issues that I take for granted is something these people face every minute of every day. Empathy ­- empathy for those affected, but more importantly using empathy to foster action. Education ­- education and awareness are also key to enacting action. Love ­- love is often hard to describe, but when you witness the interactions of EB families, it is first and foremost. Hope and Research - that is what is taking place and again there is awe inspiring research and huge efforts made by families and those with EB to help find a cure. The children and adults should be so very proud of what they are capable of and what they face with strength and determination each day. These children, adults, families and caregivers show the world the very best of humanity, and my personal admiration grows every day.
- Dan Sharp (CEO, Skinnies Woundcare for EB)

I am 72 years old, a lifelong sufferer of EB Simplex. My father had it too and I remember how he suffered with blistered feet. Unfortunately, we are from Hawaii where it is hot and humid, both enemies of EB. My schools principals refused to understand and demanded that I wear shoes even though I found I could wear flip flops with ease. These were difficult times. I thought they had ended when I graduated, but no, the school rules continued to be a problem when my own children, both of whom have EB Simplex, began to attend school. Thank goodness for debra of America’s EB Classroom DVD. My grandchildren have benefitted greatly from that wonderful and informative resource. We knew so little about this condition and neither did doctors at the time I was growing up. I have had to learn so much on my own through experience because there was no debra of America to offer resources and information in my early years. The other best thing that has happened is when debra of America sent me some preparations for wound care. I thought of my Dad who suffered so much. In fact, I made my last donation to debra of America in his name just to remember and honor all that he had suffered. I'm grateful to debra of America for making all the newest information available to us. I hope and pray that one day, enough research will give us all the precious relief we need.
- Vickie V.

What does ‘EB to Me’ mean? Well, to me it means a gorgeous, intelligent 16-year-old boy who thinks life is a giant adventure! My son’s EB dictates every moment of his life, but still he manages to greet every day with excitement and enthusiasm and dreams. I have by default become a mini-EMT and RN. I’ve met some of the strongest, most amazing doctors, nurses, dietitians, parents, researchers, and beautiful and brave children. It is a ‘club’ none of us want to belong to, but it is an incredible group. Thanks to organizations like debra of America, the word of this condition has spread and momentum is growing for fundraising for the most important thing: a cure. Thank you to everyone who links arms and supports each other through the difficult journey of EB.
– Patsy, mother of Shane, an amazing 16-year-old boy who has a combination of RDEB and DDEB

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