CF on NPR

[bookperson]

Hey everyone! I found this cartoon, syndicated by NPR, incredibly offensive. I responded to it on NPR's site as cfhacker (which is also the name of my forthcoming blog), and I think others here should read and respond to it, even if you react differently to it than I did. I'm curious how everyone feels about this woman's perception of CF.

http://www.npr.org/blogs/krulwich/2014/06/29/326170631/her-baby-is-at-risk-lauren-s-story

 

[jaimers]

It's good for the attention CF gets (since it doesn't get a whole lot) but her perception seems typical...it seems as though actual CF doctors are rarely consulted when someone finds out they are carrying a child with CF or there is potential that they might be. They always talk to a doctor or genetic counselor that tells them completely outdated information. These stories always have a doctor telling the parents-to-be that their child will live a terrible life and spin it as though every day will be agony. we definitely need to keep getting the word out there especially with Kalydeco and the other forthcoming Vertex drugs having changed our community in such a huge way.