Tell Us What EB Means To You (page 7)

EB to ME

I discovered EB through watching a documentary. As I researched the disease I became determined to help Debra and EB patients as well as spread awareness. I got involved to help others but it really ended up saving me in the end. Seeing a person with EB really puts things into perspective. In the years following I had gone through some major losses in my life and very difficult trials and tribulations, but something always kept pulling my focus back to Debra. I realized that I could either sit there feeling sorry for myself or I could step up and do something to help someone else. I got the chance to create my own event, fund raise, and was finally given the opportunity to intern at Debra. Last week I met some of these kids for the first time and they made me see why it was all worth it. Debra is an organization that will "give you the shirt off their back" and really go above and beyond. I'm proud to have the opportunity to work with these amazing individuals. Learning about EB transformed my life and gave me the ability devote what I have to those truly deserving.
- Desiree Swendsen (debra of America Intern)

We received our big box of blessings from debra of America at the end of last week. Thank you so much for everything! Ethan loves the teddy bear!
- Karolyn M.

What does EB mean to me? EB means loving and accepting my child for all of his unique abilities. Overcoming the fact that what our plan for our child is different from what God had planned for us. Loving and accepting his plan! Submitting to the fact that he is in control and will guide us through the EB journey. EB is a cruel disease that comes with suffering for the entire family. It is a life filled with heartache and sadness. EB means celebrating the happy times, the smiles, the little things we take for granted, and realizing what's really important in life. EB has taught me to love and accept things I can't understand. EB has given me a drive to be there for others, help, and lift them up whenever we can.
Maranda Asa (Mom to Madden with EB)

Living with EB for the past 61 years is the word Frustrating, with a capital F. It is Frustrating that we with EB can't take a beautiful hike in nature. It is Frustrating when you go horseback riding and end up with two raw inner thighs and your pants stuck to your legs. It is Frustrating when you have to say no to a date of dancing. It is Frustrating when you go ice skating and find that you're pretty good at it and then can't walk for a week. It is Frustrating having to sit out of gym class. It is Frustrating being left behind. And the "can't" is in our vocabulary because there are many things we just "can't" do no matter how much we wish we "can."
- Toni K.

I have Dominant Dystrophic Epidermolysis Bullosa. EB is a never ending battle. It can either bring out the strength in you or it can break you down. It is forever wearing the scars of your journey for everyone to see and the bandages of the fight you are currently fighting. It is knowing you are unique and the fear that others won't understand. It's not becoming a victim and always staying a fighter. It's knowing your beauty and not afraid to show it to the world. As a mother of a son who has it as well, it is power of empathy and love to show him he should not give in to self-pity thoughts or feeling like he will always be a victim of the disorder. It's holding him when days are tough and the wounds are bad, but making him get up and keep fighting. It's looking into your child's eyes and seeing the innocence that still exists even with the world trying to take it away. Bandages and scars are all others can see but strength and courage is what is really in each and every person with EB.
- Danielle Slocum

I am a 67 year old female and have had EB all of my life. I am not sure what type I have, but have been told that it is probably Junctional or Dystrophic EB. The older I become, the worse my EB becomes. I have extreme itching and blistering. No one, including my own 3 children, 8 grandchildren, 3 siblings, or older family members are affected by EB. I don't like to meet strangers because of how some stare at my scars.
- Dianne B.

Stealer of Peace
Nemesis
Thief
Stealer of Peace
Voracious predator
Stalking
Taunting
Demanding & attaining my absolute, undivided attention
Exhausting
Invading my every thought
I cannot outsmart you

I’m on the run
Pursued by an insidious, insatiable beast
Unrelenting, untamable
Crafty, elusive opponent
Wreaking havoc whenever, wherever

In its wake
The wounded
The heartbroken
The mentally weary

You despicable, heinous, monster
Formidable enemy
Your reign must end

Be forewarned
We are banding together
Gathering resources
With great resolve we are launching an all-out campaign
We intend to turn the tables
We intend to bring you down!!

- Donna S. (EB mom]

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