Tell Us What EB Means To You (page 2)

EB to ME

I first became aware of EB years ago, while watching a TV documentary. Time passed and I forgot about what I had watched, until I met my now dear friend and her daughter. God brought them into my life for a reason. I now see the struggles, unimaginable pain, and discomfort they live with on a daily basis. Knowing I couldn’t anything medically to help, I turned to debra of America and offered my time to raise money and awareness for this savage genetic disorder. My life will never be the same, in a good way. Thank you to debra of America for all they do for the families, awareness, and the daily support they offer - and I commend the families for all their tireless efforts. Spread the word, awareness is key!
- Karen K. (debra of America Local Event organizer in Second Life)

Once you see EB, you never forget it. That’s why I fight EB. That’s also why in the Spring of 2014 after a 10-year hiatus from long-distance running, I committed to run the Pittsburgh Half-Marathon for TEAM DEBRA. Thanks to my debra of America online donation page and the support of my generous colleagues, the EB Advocate team raised more than $2,500 for EB research. Running generates a lot of great metaphors for life. I lost a toenail during my training – not uncommon for runners. But the pain of losing that toenail really put in perspective the trials of adults and children who live with EB every day of their lives. Sure there was pain. But my nail grew back. Knowing that doesn’t automatically happen for everyone is heartbreaking and downright unfair. People who fight EB everyday inspire me to keep going in my journey to raise awareness and help fund a cure.
- Christine Hartz, McKesson Patient Care Solutions (formerly National Rehab)

EB to my family and me is an obstacle. We have EBS-WC, the "mildest" type. I often feel bad for complaining about my pain when I see the other types that are just unbelievable. Our type blisters our feet. Where do we spend our days? On our feet. My dream job is to be a teacher, a career that requires incredibly long hours on your feet. It seems like a very hard dream to achieve, but I'm going to do it. I have a year left in my schooling, and I will be a teacher. My son has EB and my mom has EB. Sharing this condition has brought us closer as a family. And while it's a sad bond, it’s a strong bond. We're here for each other when we need to cry from the pain, let each other know when we find comfortable shoes, and even compare our war stories of blister size. EB is a horrible condition that is completely unforgiving, relentless in its pain, and makes everyday life seem almost impossible some days. My heart goes out to those who have it so much worse than my family. We're all in this together!
- Melissa F.

June 21, 2007 changed my family’s life. Joella Gale Murrray was born that day; my lovely grandchild was in agony. She was born with EB. June 21, 2014 a seven year old 'cooking ' birthday party was held to celebrate Ella's life and her pizza making skills. No way was EB stopping her! But she is still in agony. I marvel at my granddaughter’s bravery and her parent's ability to make her life as normal as it can be. Every day for them is a prayer for comfort and a cure. Thank you debra of America for working so diligently to have our family's prayer answered.
- Janet Murray (debra of America Benefit Committee Member and Grandmother to an EB Child)

We didn't know about EB until my daughter was born 7 months ago and everything has changed since then. We thought it would be the most difficult thing to live through, but she has a beautiful and strong soul. We have learned that angels exist. Her name is Altair and she is my hero!
- Kenia

There's so much more available to people with EB today, as compared to decades ago. Unfortunately, we don't have all the answers yet, and as a person nearing 70, I don't expect them in my lifetime, but I feel certain that someday we will have a handle on this disorder. Stay hopeful!
- Karen G.

To have EB means to have no fear, no room for doubt, no time for second guessing. When you're up against something so devastating there is no choice but to move forward to the best of your ability. Through my short time with Abbie I learned more about how to live a fearless life than I ever thought possible. Today I hold her with me as a constant reminder that life owes you nothing and never take for granted what it does give.
- Cary Bell (Director of the documentary, "Butterfly Girl")

I'm 41 with Recessive Dystrophic Epidermolysis Bullosa. I didn't meet anyone with EB until I was 35, so growing up was often lonely and frustrating. Those feelings haven't changed, however, my perspective has. I spent months, every year, in the hospital, being poked, prodded, biopsied, and having countless procedures, not to mention unbelievable pain, both of which continue to this day. The child life department was instrumental in helping me understand what was happening, why it was happening and how the doctors were helping me. My mother raised me by herself and even though money was tight she taught me, through her actions, to fight for what I wanted/needed and to not let EB define me or keep me from accomplishing any goal. I learned to persevere when most people would give in, and I will always do so. Many people see EB as a horrible thing to have happen to them. I won't say my life wouldn't be easier if I didn't have EB, but I also know I would not be the person I am today if I had not experienced all that I have - and I would not change who I am for anything.
- Jennifer B.

My little brother AJ has EB. He came into my life 6 years ago, and it has never been the same since. It is so hard to think about all the pain he is in, but he is constantly one of the most joyful people that I know. EB has been called "the worst disease you've never heard of". It's incredibly devastating, but there are children and adults with an attitude and heart like AJ all over the world. They can teach us that achieving life is not equivalent to avoiding death. And in the same way, joy is not the absence of pain. There are always going to be difficult things in life, but it's how we respond to those situations that truly matters.
- Andrew Fischer (Filmmaker of "LIVEBRAVE")

I wanted to write a thank you from the bottom of my heart for your generosity. The Mepilex from debra of America has been a godsend. I honestly can’t tell you how much we appreciate your kindness.
- Christy S.

Ben Jr. was born with Junctional Epidermolysis Bullosa (JEB) and we thought that our lives were going to end right there and then. It felt like my heart was ripped out of my chest, little did we know that this strong, courageous soul, was going to change our lives forever. Ben Jr. may have raw wounds and be wrapped in bandages from head to toe, and eat, speak, and walk with hesitation, but Ben Jr. is changing lives with his smile and determinations. And not only is he a blessing to us, but he is teaching us the true meaning of life and how to live! #stopEB we need a CURE NOW!!
- Sirena Wiley

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