Sunday, October 21, 2007
Extreme Makeover: Home Edition - Carter Family
I'm thrilled that Chiari got national exposure tonight!!! This is by far the most important thing!!!!
I'm a little disappointed in how much ABC dramatized the severity and symptoms.
I can't blame the Carter family for how they were edited.
I'm disappointed that such emphasis was put on the possibility that Chiari is hereditary. Moms feel bad enough for their kids that have Chiari - this just made them feel that it was their fault that their kids have it. The statistics on passing Chiari along to your kids is 12% if you have it. I look at it this way: I know I have it, I know it's possible that I could pass it on to my kids one day, I'll look out for symptoms and have them tested early.
Most people with Chiari don't die. Yet there was significant emphasis placed on the possibility of death from Chiari by ABC's editing. (I visited the Carter's website and don't believe that it's anything they intentionally emphasized.)
The Chiari Support Group on Yahoo (great site!) is now flooded with people panicked about the possibility of dying from Chiari and of passing it onto their children.
At least the nation has heard about Chiari!
This is just my story of my experience with Chiari. Until I was diagnosed, I'd never heard of it, and I just want more people to be aware of it. I'm not a doctor, so don't quote me on any of this stuff - k? If you are looking for information about Chiari Malformation, a lot of the more informative posts are the older ones.