Posted by Ted (205.188.197.157) on September 10, 2000 at 14:00:04:
In Reply to: My 2 cents... (rather long) posted by Bennie Sue on September 10, 2000 at 13:19:42:
But even those were my secondary reasons for knowing the word of CH has to get out. Sue, I've lost jobs because of my CHs. I couldn't really blame the bosses when I knew if I was a boss and had to rely on someone being able to work during the established times is imperative to getting the companies work done. And being chronic, that couldn't always be relied upon. I've lost many friends because they got tired of calling and having plans changed at the last minute do to attacks. I can't blame them as they weren't family. The thing with educating the public is correct diagnois for all those out there misdiagnosed. How will they get relief when doctors hardly know enough about CH to properly diagnose someone suffering with it? I want the word out there for them. But, selfishly, I want the word out there for me. It might be a coincidence, but since Dr. Goadsby's findings about the hypothalamus region came out the number of people diagnosed with CH went from 0.1% to anywhere from 0.6-1.0%. The more they correctly diagnose us the larger our numbers will climb. The larger our numbers climb the more chance the people with the money, or even the politicians wanting votes, will devote resources seeking better treatments and a cure. Or even, and this does sound fantastical but it is possible, that one billionaire philanthropist will be correctly diagnosed with CH and devote millions of dollars towards research. As I said, I agree with Bennie Sue's reasons for getting the word out. But frankly, I am more drawn to the belief that getting the word out will bring us closer towards a cure.