A raw look at EB

WARNING: This post is about a genetic skin disorder, and will have graphic pictures of wounds. This post is not for the faint of heart.



My children and I have a genetic skin disorder called Dominant Dystrophic Epidermolysis Bullosa (DDEB); it is so rare, that doctors only learn of it in their text books. If I find a doctor that HAS seen it before, they are always amazed to have encountered it again in their lifetime. That said, I am connected to over 500 people whom EB has effected or affected. I suspect that number is even higher. A great place to learn in depth about EB is at http://debra.org or at http://ebinfoworld.com

Not everyone wants to click back and forth, so I will sum it up 2 ways. The first is to say: Basically, or skin is not properly glued down to our flesh. We are as delicate as the wings of the butterfly. Better yet, let me explain it in a more visual way. Imagine for a moment that great empty schoolyard field. The grass covers the dirt, and the kids can play football or soccer with no problem. The grass MIGHT even be rooted well enough, that if someone drove out on it, no harm is done. Now imagine that same field, soaked by the rains. When that vehicle goes out on it now, the tires spin, the grass lets go, and muddy mayhem follows. Your skin (the grass) would be the field in the dry times, with deep strong roots keeping the damages of life (the vehicle and the kids playing) from drawing blood (mud). Our skin, the grass has weak and damaged roots, so even in dry times, it sloughs off as though some punk was out doing doughnuts on the soaked field.

Clear as mud, right?

I think you get it, and if you don't, a few pictures will help.



My oldest is 13 years old now. She was sitting out back on a swing, and lost her balance. She slipped off the swing and landed on her knee in the soft grass. Her entire knee lost it's skin. 5 days later, and it is still painful and tender and carefully wrapped. We can't use traditional bandage supplies, as bandages can cause as much damage as life does!



This is my youngest's foot. She gets damaged from walking, just walking. She also has to be patched up often for stubbing her toes, or kicking the bouncy ball, or getting stepped on by others.



These pictures show how I might wrap a foot with only 1 toe involved, leaving the rest to get fresh air.







None of the bandages would stay on, if I don't wrap up past the ankle.



It's so much easier to see the bandaging happening than it is to see the fresh raw wounds... It's easier to hide it all. Sweep it under the mat and pretend it isn't a part of our day to day life. But I can't. It is a part of us. It makes us the strong people that we grow to become. Our disabilities do not hold us back, they teach us how to FLY and to reach for the impossible.

It's like that tow truck on that Pixar Cars movie. The battered tow truck is offered a chance to have all his dents fixed and all the scratches buffed out... the chance to be a whole new truck. Does he leap at it? No. He tells them that his scars were his memories, a road map of all the fun and scrapes he had gotten himself in, and he didn't want to forget a scratch.



Yea, we have some rough times. Life isn't all unicorns and rainbows. We cry. We ache. We hurt.





Life is all in how you look at it though, and without the rain, we cannot have rainbows. In my house, we look at the good, and use it to grow strong. We weren't given this body to cry about the hardships... we don't have time for that.

I post this, because it is a part of us. It is part of who we are, or more importantly, WHY we are who we are. I post this, because if I don't, then I am still hiding it and then I am not truly being myself. I don't mention it often, but I refuse to hide my scars. I refuse to hide my bandages. I refuse...

https://www.facebook.com/irefuseeb Learn more about "I Refuse" EB Awareness campaign.