Meet Ed the Cylon. Ed is a friend of mine, a good friend that knows a lot about me. He traveled a long way to reach me and find a loving home. He arrived at my doorstep one morning and we became fast friends. He was a little beaten up when we first met, but I have carefully fixed him up and gave him a new coat of paint.
Ed is a veteran, and although he wasn’t in any of the wars his people fought. Ed just wasn’t cut out for the military, so he got discharged and began to travel throughout the galaxy. He loves traveling and meeting new people, but since he moved in with me, he hasn’t gone anywhere.
Ed knows all about the disease I have and gets really frustrated when he sees me not doing the things I love. I have a rare genetic condition called Ehlers-Danlos syndrome that keeps me in constant pain. This EDS has no cure and there are very few doctors or scientists working on it. Most doctors don’t even know what to do with someone like me. The typical treatments are painkillers and water therapy. Any heavy lifting or high impact exercise will do more damage than good,
EDS comes in many forms and combinations, I have the hyper-mobility and some vascular traits. If I lift my arm over shoulder height, it will dislocate, and when it does, it really hurts. Most of my joints dislocate or move slightly out-of-place all the time. My pain is never in one area of my body, the pain shifts around and is always present. I also have chronic sleep problems and I get fatigued doing simple things like washing my hair. EDS is my enemy, and now Ed wants to do something about it.
Ed knows I love to travel, but lately it is becoming harder and harder. He also knows that not many people know what EDS is, so he is going to raise awareness. Ed’s plan is to start traveling the world and telling movie, TV, musicians and any other famous people all about it. He will have a journal with him in hopes that these stars will write me and other sufferers of EDS small notes, or draw in it. Anything they want to do with him is OK, as long as he gets his picture taken with you.
Ed knows a few people he would like to visit first and he hopes they will be OK with him visiting them for a day or however long they want. When he arrives at the first persons house, he will have his journal with his home address and contact information in case of emergency. Once he has either filled up the journal or no one will take him in anymore.
The first person Ed wants to meet is Tricia Helfer because he saw and loved a show she was in. He actually saw some of his friends on that show as extras. How cool is that? He would also like to meet Katee Sackhoff, Edward James Olmos, Wil Wheaton (Ed is kind of a geek), Nikki Sixx and so many others.
So help me reach out to these stars to help Ed spread the words, “Ehlers-Danlos Syndrome”, and show the world people like me, a person with an invisible disease, and get doctors to really start working on this one. I can’t afford to travel as much as I want to, so Ed is going to do it for me. Until I hear from Tricia, who as I mentioned for Ed earlier, Please read the links below and check out my post, “Open Letter To Those Without Ehlers-Danlos Syndrome.” to learn what it really feels like.
Ed and I thank you all in advance, he REALLY wants to get out of the house for a while.
Thank you all,
Ed the Golden Cylon and Michael
A bunch of information on EDS HERE http://www.ncbi.nlm.nih.gov/books/NBK1279/
More info http://www.ednf.org/documents/Pain_and_Managing_Pain_2012S.pdf