IdunnoO

You're welcome. Vertex Pharmaceuticals is developing the drug and it's in phase III clinical trials. They already put out a similar drug that affects about 4% of the CF population. Your friends daughter will likely be 6 by the time the drug is approved by the FDA and that is the youngest a CF patient can be to be prescribed the drug. CF children born recently are going to be able to live a much more normal life than those born 10, 20, 30 years ago.

I have CF and saw OP didn't reply but I just wanted to say that there is most likely going to be what is dubbed as an "almost" cure for most CFers in 2-3 years. It's going to treat the underlying problem gene which will cut down on lung infections, blockages, and the other life threatening things we face. I think that is encouraging news to tell a parent who has a newly diagnosed child. It is expected that this is going to drastically increase the average life span of a CF patient.

Wow that is interesting. I guess my perspective was that cancer is either treatable or it isn't where yeah you go through hell for a period of time but you either come out a survivor or you don't. With CF I feel like a ticking bomb battling constant infection after infection and it will ultimately end me. Thanks for sharing your experience, you're a true fighter man and I hope you defy the odds as much as possible.

I suffer from CF myself and I've always said I would have rather been given cancer or HIV than CF. Now that you've experienced cancer what would you have rather been given if you could choose between the two?