Posted 5/13/2009 11:10 PM (GMT -7)
It's a fantastic idea for you to be doing this.
With my mum, even though she's a psychiatric nurse and done papers on CF, it feels like she has absolutely no clue still when it comes to CF and offers only irritation rather than understanding. However, I don't know what side she did to CF-if she did it from a doctors point of view-I'm sure some of them still think CF is a piece of cake. I think the study you seem to be doing is a good one which you and others can gain understanding from. CF is a very individual thing and varies a lot between patients. CF can cause a lot of secondary problems, such as liver cirrohsis, kidney trouble, tinnitus because of some of the meds commonly used to treat infections, diabetes. However it also doesn't effect things such as the eyes (there is no CFTR protein in the eyes, however of course medication still might cause problems) and apparently CF hearts are very healthy due to the fact they get extra exercise trying to compensate for CF lungs.
I am going to ask you, if it's possible for you to email our admin with your ideas before posting them. We're technically not allowed studies of any kind on here, without Peter's permission. However this isn't a research study, and I definately think it's something you could gear as something helpful to everyone on here-patients themselves, parents and other family, and also people just wanting to learn more about CF in general.
You can contact our Admin Peter by emailing at: firstname.lastname@example.org