Posted by Joe Stone (38.157.186.10) on September 08, 1999 at 19:32:54:
I know this subject has been brought up many times but I wanted to put in my two cents worth while it was fresh on my mind. I'm sure this won't be the last of this discussion. Many of us have proposed their concerns about the namesake our disease has been granted, clusterheadache. This name conjures up many an idea to the uninformed who come across our affliction. One of the primary concerns I've heard is that when folks hear the word headache they are quick to dismiss the disorder with a tylenol and a prescription to "quit stressing so much." As we all know, the reality is hard for many to believe.
About 10 years ago I traveled in an organization called Up With People that really changed my life. A Fantastic experiential education. Young adults travel around the world for a year and stay with host families to experience cultures and the world without a textbook. Best year of my life. But when people hear the name Up With People they remember how many times the organization has been made fun of on the Simpson's or David Letterman and not about the great things they've done. By the way, Letterman interviewed with them in the 60's and was turned down. My point being, I can understand how a name can allow people to interperet(sp)something by first glance. What is the general concensus on this? It's a bit like a band that's been playing for awhile and has some followers but they haven't gotten too big yet. Some of the band is unhappy with the name and some are fine with it. Do they make an attempt to change it and further confuse their current fans? Will a new name really make that much difference? Will it give them more legitimacy? OUCH is a terriffic name for our flagship non-profit. It simply fits. It would be a shame to change that. We've all come up with different names at one point or other. I'll throw mine in for kicks. In the spirit of OUCH, I'll submit something like, cluster hypothalamia or something. I apologize if someone has posted something similar. Just throwing things around. If we have to live with these damn things we might as well give them a name we can agree with. Post on clusterheads.