Re: Daughter of 13 diagnosed with CF three days ago
The best thing you can do right now is contact the Cystic Fibrosis Foundation (go to their website to get their toll free number). They can refer you to your nearest CF Center where patients are treated by CF care teams (pulmonologists, respiratory therapists, dieticians, etc) all of whom really *know* what cystic fibrosis is, how it affects the patient and his/her family. I used to work for a state CF chapter and whenever a parent of a newly diagnosed patient called, I would encourage them to contact one of the CF Centers in our state. They have lots of information that will be very helpful to you as a parent as well as good info' for your teenager. The CF specialists at these centers work with your child's local physician. There's more to cystic fibrosis than keeping lungs healthy which is why there are a number of different medical professionals on the CF Center care teams (and why your child will greatly benefit by being seen and then followed at a CF Cener).