Out of some random curiosity I decided I would do some numbers research on Devic's Syndrome. What I found out nearly made my jaw hit the floor. Only 1-2 per 100,000 people world wide has Devic's Syndrome. Now if my math is correct, which it might not be because I suck in math, that means there are only about 10,000 people in the world that has this disease and I am one of them. 10,000 people out of a world wide population of 7.046 billion. What the hell?! I knew this disease was rare but I never imagined this rare. I can't even try to put that into a percentage because my math skills are very limited.
Now let's compare Devic's to its sister disease which is Multiple Sclerosis. Currently there are about 250,000-350,000 people world wide with MS. Plus, studies suggests that 200 new cases are diagnosed each week. Wow! I don't know whether to feel frightened or special. I always liked to stand out from the crowd but I think in this particular situation I would be O.K. with fitting in. I went on this site, myelitis.org, that seems to have a lot of information on Devic's. I happened to stumble across a paragraph of listing symptoms of its flare-ups. I think I made the news and didn't even know it. The site said, in rare cases, persistent hiccupping and vomiting can result from a flare-up. When I had this no medical profession, including my world renowned neurologist, ever heard of this flare-up. Well, let me give my neurologist his credit, he did figure it out way quicker than any other doctor. So I believe somehow I made headlines. Not only do I have a rare disease I also had an even more flare-up from this rare disease. I guess I really do like to make a statement.
I am still surprised, even after all this time, whenever I tell a person including medical professionals what I have I always get the confused look. This follows with the normal question of, "What is that?" I start to explain but then find it way easier to just say it kind of like MS then they usually get it. This reaction does not upset or anger me in the least. I find it a golden opportunity to make more people aware of it. If I can bring more attention to it then maybe it will get more research and fundraising efforts for treatments and maybe even a cure. I throw that notion around my head quite a bit of how I can bring more attention to this illness. A fundraiser? A benefit? Hell, a freakin billboard maybe. Well, if you have any ideas please feel free to comment. I could use them. Pass along my website and maybe that will be a start. Word of mouth.
Here's a YouTube video I found explaining the science behind the disease.