Tell Us What EB Means To You

EB to ME

Tell us what EB means to you. Click the red “Contact us!” tab on the bottom right-hand corner of this website.
In the blank space provided, type a short story, quote, feeling, or memory about EB. We will take your message and post it right here
on this page. Anyone is allowed to submit. You can be a person with EB, a family member, an advocate, a volunteer, or someone who wants to help spread awareness. Please allow three days to post and use 200 words or less. You may indicate if you would like your name to be anonymous. Don’t forget to share this page with your friends and family so they can submit their very own message.
Don’t know what EB is? Click here to learn.

2014 debra of America Patient Care Conference
Photo credit: 2014 debra of America Patient Care Conference
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Epidermolysis Bullosa has been a part of my life for the last 8 years.  In 2006, I began my work as the debra of America EB Nurse Educator, and I have to say, I hate that EB exists and is so cruel to all of the amazing people I have met over the years. One mom, who lost her baby daughter to EB, asked me how I could work with this nasty disease every day. The answer is easy. Someone needs to answer the phone. Someone needs to be a calm voice in the storm. Someone needs to listen when EB breaks your heart. For now, I am that person. And my hope is for the day when nobody needs me anymore. I live for the day when I can say, “I used to work with EB. It was, “the worst disease you’ve never heard of”… but that was before they found the cure.”
- Geri Kelly, RN

Both myself and my brother were born with Recessive Dystrophic EB and as we were growing up, debra of America became a life line for my mother while she was searching for answers and information. EB has a great impact on everyone around you, so it is important to have a support group that parents or people with EB can lean on. I am now a member of the Young Leadership Committee for debra and write a a monthly blog about my life. I have had so many people reach out to me with their personal stories that have expanded what I even thought was possible.
- Andrew Conrad (debra of America Young Leadership Committee, 28 EB)

I am an EB Grandparent, but I was also an EB parent to 3 of my 4 children. Fifty years ago my first child was diagnosed with EB when he was 2 months old. His EB was more mild and I wrapped his knees and ankles and let him be a normal little boy. My grandson’s EB is much more damaging. Shane is now 16 and has been a lesson in courage for his entire life, with EB affecting much of his body. Life handed his family a challenge and they cope with it every day as examples of living positively despite the complications. I wish I could do more or wave a magic wand and take away the pain that Shane endures. Being with Shane is a complete joy because of the attitude and intelligence that he possesses. Life handed him a challenge and gave us all a hero.
- Kathy DiGiovanna (debra of America Tennis Committee Member and Grandmother to an EB Child)

I absolutely love debra and what they’re doing for those with EB. It's nice to know there are people out there working hard to find a cure.
- Kayla H.

I would just like to say thank you so very much for your generosity, debra’s Family Crisis Fund enabled me to use it for my handicapped vehicle. You made it more affordable for me and my parents. I am now a freshman in college at Macomb because of your generosity.
- Ron and Mary H.

My son and I were fortunate to meet some children with EB at debra of America’s annual benefit. As I prepared for bed that evening, meditation a part of my days end, I reflected back on the experience and started to cry. The decision was made then to not scratch any part of my body for the next 3-days. This mind challenge allowed me to experience just one piece of what it would be like to live life with this terrible condition. I asked the universe to heal these gentle souls. I realized that EB could also stand for "Enormously Brave!" I encourage everyone to try this 3-day challenge.
- Celeste Onorati (Astrologer and EB Wing of Roses Designer)

Do you know what it means to have a child with Epidermolysis Bullosa? For me, it means having to thoroughly inspect every centimeter of Shaelynn's skin every morning and every night. It means taking a sterile needle to every new blister in order to lance and drain them so they don't get larger and more painful. It means having to console her and apologize while she repeatedly says "no no no" in an effort to get me to put the needle away. It means bleach baths to prevent infection in her many open wounds and dousing her with mass quantities of ointments and dressings and specially designed bandages otherwise intended for burn victims. It means only gentle hugs and kisses and no holding hands, and removing elastic from every diaper. It means ignoring stares and smiling through ignorant comments from people who don't understand the battle we fight every day. It means all of these things but most importantly it means having a child who smiles in the face of adversity. It means seeing heart, passion and strength in a very tiny warrior. It means having a pint size hero that can laugh when most others would cry. It means seeing all the good that comes with the bad - and knowing in my heart that I am an incredibly lucky mommy to have been blessed with a brave butterfly child.
- Veronica O'Neill, Mommy to Shaelynn (3) born with EB Simplex

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