Chiari Awareness Month

September is Chiari Awareness month. What is sad, to me anyway, is that it is not recognized in all 50 states. Governor Perry signed a resolution declaring September 2014 an official Chiari Awareness month. There are several people working on trying to get a permanent resolution so every year September will be Chiari Awareness month. I understand that September is also Childhood Cancer Awareness, Prostate Cancer Awareness, Leukemia/Lymphoma Awareness and so many other things that need awareness as well. There is a part of me that feels somewhat guilty and then I remember that there is no reason to feel guilty. Chiari Malformation is just as important as the others. More people in the US are affected with Chiari than ALS and Huntington's combined. The number of people affected with Chiari is on level with those affected with MS. About 1 in 1,000 people have Chiari.

I have often wondered, since being diagnosed, why is it that no one has ever heard of Chiari unless they are affected. I've decided because no one "important" enough will talk about it. It isn't that someone that is high profile hasn't been diagnosed, they have, it is just they don't talk about it. Those of us with Chiari need someone that is high profile to talk about it. Roseanne Cash has it, but doesn't talk about it, George Clooney has it but doesn't talk about it (he just says his brain is falling down), Chris Dugan former NFL Player has it, but isn't vocal about it although he did give a wonderful motivational speech about having it about 6 years ago.. We need someone that is vocal about it more often. Without people being vocal, we will never have a cure. We will never have anything more than brain surgery. We will continue to have doctors accuse us of being drug pushers of being a hypochondriac and sometimes have complete strangers accuse you of having Munchausen Syndrome because you talk about Chiari.

It is definitely an uphill battle. One that one day I hope we will win. Unfortunately, right now, the future does not seem so bright.

In closing, here is the link for Chris Dugan's speech. It is about ten minutes long, but it is absolutely amazing. Chris Dugan Video