Here's another perspective from a mom of a 13 yr. old daughter who has cf. She is tired a lot and cannot keep up with normal kids. She can't walk or run as long or as far as her sisters, requires breaks a lot. She has to take a lot of meds. and it is difficult for her to spend the night with friends or go to parties that coincide with med. times. When we go somewhere as a family for a day outing, I have list of meds. to pack. She can't even eat without meds. Then there are all the Dr. appts. We have financial burdens with the copays for office visits and meds. She worries about her health as do I and that creates stress, especially if a cold or virus sneaks up on us. CF has changed our lives forever and not a day goes by that we aren't faced with it. You can't forget about it for a day or a week, it is there and requires treatment every day, 7 days a week. It doesn't take breaks for holidays, in fact these are the times when it sinks in more. When we go to a family dinner for a holiday and I have to pull out meds. or the nebulizer or whatever, it reminds everyone. My daughter's friends and their parents don't know about the disease and I feel like we are constantly explaining it to someone. We also have trouble going out to eat. Even though many restaraunts have non smoking areas, the smoke still travels. We have a very hard time eating out if there is smoking in the building. (there is not smoke free section, only non-smoking and there is a difference.) Hope this helps.