I have to admit, Ive been pretty cynical when it came to this ice bucket challenge stuff. How can dumping water on someones head or donating a measly $100 change the medical world? I personally know how it feels to be confined to a bed, unable to move, what its like to have your body plotting against you and I know above and beyond that testing, treatment, and research for rare conditions cost more like hundreds of thousands of dollars. BUT the truth is, it isnt about the number of likes we get on our video posts, its about spreading awareness and raising money for these rare diseases that have no cure. I would like to personally thank Caitlyn Mitchell for nominating me for this challenge. It wasnt just a nomination to have freezing water dumped over my head, but she challenged me to look more into it, and realize that a few moments of discomfort is NOTHING compared to the discomfort people with ALS feel every day. I am doing this challenge in honor of Mr. Tobin, a man who raised such amazing children and grandchildren who have welcomed me into their lives and into their family. I took it upon myself to change things up a bit (rare, I know) and call this one the EDS ice bucket challenge. One thing that ALS and EDS have in common is that they are both rare conditions with no cure. In the medical world, we are considered zebras... Aka not the common breed. Our disorders are not the first idea to pop into doctors heads when they are confronted with a medical mystery and often times instead of solving the mystery, they throw up their hands and just give up. Great doctors, huh? As many of you know, I suffer from Ehlers-Danlos Syndrome. A connective tissue disorder where my collagen is faulty from a mutation in my DNA. Not only do the doctors have no cure for this disease, but most have never even heard of it. Even the, oh so famous neurologists at Hopkins couldnt figure out what was wrong with me this last time around the block. It is so rare that EDS affects about 1 in 5,000 people. There are six types of EDS and my type, in particular, can affect as many as 1 in 250,000 people... So for all you single guys out there, yes, I am a 1 in 250,000 kinda girl In honor of the first ever Ehlers-Danlos Syndrome Center at GBMC opening and the official ribbon cutting ceremony tomorrow, I would like to nominate Rachelle Lehman, Taylor Profitt, and Grady Cooper to take part in my version of the EDS ice bucket challenge. I want to urge all of you to not just throw water on your heads, but learn about the cause you are taking a stand for and stand up for those of us who cant on our own. For all of you other skeptics, cynics and disbelievers, like me, who initially thought that something so great to go viral could be too good to be true, I want to remind you that we do not live in a perfect world, so no people dumping water on their heads wont give us a cure, but it will give us awareness. When your body is destroying itself and is literally falling apart bit by bit, sometimes a little awareness is all we can hope for, and that is good enough for now. For those of you who would like to learn more about Ehlers-Danlos Syndrome, I urge you to visit ednf.org (any donations for EDS can be made through that site, you can even choose to donate specifically to the new research center!) If you would like to help me further about spreading the awareness of EDS to the physicians you go see, please reach out and I can provide you with some materials for them to learn from! A special thank you to Lucas Shipley who honored me in his ice bucket challenge and donated to the EDNF cause! It is people like you who are willing to stand up for us zebras that gives us hope! ...oh and you guys have 24 hours! Have fun
Posted on: Sat, 16 Aug 2014 02:17:11 +0000