Hi Snowboarder13,
My daughter is 16 years old and has RSD, She has undergone Ketamine infusions with great results. I understand your frustrations and I read in one of your posts that you are 17 years old. Here is a way that you can get the word out. Take a moment to email Oprah, the Doctors on NBC, and other daytime shows. Send them your intro, explain what RSD is, tell them what you have told us. How this disease has robbed you of your young life, there are many young teenagers on this board and together you should write and let them know. They may listen to you, you are a child, I know you are 17 but you have more clout than adults when it comes to illness. There was someone on facebook, I believe she tried to get everyone to email Oprah on one day in July, with some success, I know there is an old post on neuro talks that asked everyone to email Oprah, maybe someone here can remember who it was that had the original post.
Remember Snowboard13, you are your own voice, this is your disease,
let them know...I have faith in you!
I am sure that we all can help, get it started. Good Luck.
Sandy
Quote:
Originally Posted by snowboarder13
WE do not have cancer. WE do not die from this... Unless you count emotionally. WE sit alone, emotionally dead to the world, trying to deal with our pain on our own. RSD
Just because we dont die from RSD doesnt mean we shouldnt be considered when it comes to medical research. Just because we dont have cancer doesnt mean we arent affected by this disorder, this dystrophy.
The fact is that we just cant sit around waiting for a cure for cancer then waiting for 'them' to start researching RSD.
Cancer is just uncontrolled mitosis. RSD is still an enigma because every case is different. Not different by the pain we feel but by the way we get RSD, the way we are treated for RSD, and the way people react to RSD. Some people act like they care when in actuality they dont. Some people actually do care. Thats just how things are.
Today you see shows on tv about tourette's or parkinsons, or cancer for that matter, but you dont see RSD do you? More and more people have RSD and yet no one knows about it? How are we supposed to be recognized if no one even knows what RSD is or how it affects us?
I'm not saying that all of us need to be on tv but why not some of us? We could tell our stories, and try to help others like us by getting the awareness up. If RSD was as well known as cancer, new treatments would be popping up every year! Maybe then we could find some relief...
Why go UNNOTICED?
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