Home
Blogs
Forum
CF in the News
Memorials
Rose Fund
Rules
Therapy Guides (click to expand)

NoExcuses Kalydeco approved! http://www.cff.org/aboutCFFoundation/NewsEvents/1-31-FDA-Approves-Kalydeco.cfm


Rosielee CF in the news:
http://www.dailymail.co.uk/health/article-2093771/Teenager-given-days-live-life-saving-lung-transplant-spending-10-YEARS-hospital-planning-funeral.html


2005CFmom Jennifer, my husband has a bronchiectasis diagnosis and he uses pulmozyme. He was tested for CF the test came up negative. I think his doctor felt his was a very special circumstance and wanted him to be on pulmozyme.


JennifersHope I know 99.9 percent of the people on here have CF dx, but does the people on here that don't have CF but just bronciactesis inhale Pulmozyme? I was on it for years, and taken off of it when I was undiagnosed, now they are trying to get me back on it and I don't think I am going to get approved, anyone have any luck with that?


TexasDex Please bear with us, some site features may be unavailable while we attempt to upgrade to the latest version of the forum software.


catboogie I am blind. Thank you, Amanda. :)


Mandagment catboogie, go to the general forum, at the very top, there is a 'how to" thread with a orange circle next to it. Our very own Seven made it.


catboogie can someone tell me how to post a photo on the forum?


Rosielee I know, I am aware of the vast amount of mutations out there, but over here, the hospital and private clinics only test for 50 that are most common in medditerranean people. In the UK it is the same, so I'm gonna have to kinda trust them, because I have no other option. Thank you very much for letting me know though, I do appreciate it, but I have no other option. Thanks again :)


NoExcuses @Rosielee be careful about testing for just 50 mutations. We have someone on this site who wasn't tested for all known CF mutations (there are over 1000) and she ended up having a child with CF because he husband's mutation wasn't picked up on the small screening.