Prayer For Those Afflicted With "Butterfly Skin Disease"

SarahsKnight

Jesus Christ is this Knight's truth.
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Honestly, everyone, I had never even heard of this disease until reading an article about it that someone who suffers from it related her personal experiences with it on throughout her life so far. It is called Dystrophic Epidermolysis Bullosa, where basically your body lacks the collagen that tethers your skin to your muscles (at least that's how the article I read described it), thus it becomes abnormally easy to suffer from constant wounds where your skin is removed, resulting in chronic pain and an earlier-than-typical death. I can't imagine how it must be to live with a condition like this, having to constantly watch yourself during or stay away from even the simpler daily activities of human life lest your skin fall off.

I have heard it is pretty rare (about 200 are born in the U.S. with the disease every year according to debra.org), so I wanted to make this thread to raise awareness of it and I ask everyone who sees this to join me in prayers to our good God that we will find a way to treat or outright cure this horrific disease one day, and in the meantime that He ease the likely chronic physical pain of those who suffer from it and help them to live as normal and healthy lives as they can. :)

If you have the time, please see debra.org for more information.
 

Aldaelen

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Years ago there was a littler girl who lived around here named Grace peshkur. She had Dystrophic Epidermolysis Bullosa. My school at that time held a fundraiser school dance for her. All proceeds went towards her family because her treatment was very expensive. I got to meet her that year in 2006, i was 13 years old. She was a beautiful little girl. I felt so terrible that she had to suffer every day like she did. She touched so many of us and i will never forget her. She passed away in 2009 from a heart attack at age 7. In 2011 they Named a nearby bridge in honor of her. I say a prayer for her and her family every time i pass under or over that bridge.
She isn't suffering anymore and is in Gods hands.

Her story
http://www.debra.org/familystory_grace

Story of the bridge
http://patch.com/new-york/sachem/holtsville-bridge-to-honor-grace-peshkur
http://patch.com/new-york/sachem/waverly-avenue-bridge-memorial-in-honor-of-grace-peshkur
 
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