I probably did overstate the importance of knowing what mutation you have. One of the problems I see with CF verses something like cancer is the lack of staging. In cancer, you are diagonsed with a type of cancer and a stage (like stage 1,2,3 or 4). That staging tells a lot. Based on that, treatments are formed, life expendicy given, and down the road it is a base line that other doctors can compare to. CF doesn't have anything like that.
My daughter had a broad gentic study done. They weren't just looking for CF because as I stated, they had already ruled it out. My mother-in-law presented some CF related symptoms and we finally forced her to get a study done. That's another story, she was playing ostrich thinking what she didn't know wouldn't hurt her. She came back with some mutation that wasn't CF, but did display CF related symptoms. Mainly, she has to take supplimental enzmynes.
I did attempt to add that a lot of our problems with the sweat test was the lab and incompement people at the time. As all of you know, a bad experience can often times created unfounded negative feelings toward something. In our case, it was the sweat test. I can rationally say that I shouldn't be all against sweat tests, but I am because of the road my daughter went down after a false reading from the test.
I don't know a lot of details about hte gentic study, but I am suprised to hear false readings. I would have thought that if they found abnormal genes, they would report that. It would then be the doctor's decision as to whether it would be a problem. Maybe not.