What's new

Latest profile posts


I would love to get that link to the webinar about kalydeco and pregnancy. My daughter is expecting now and we would appreciate any information that's available.

Thanks so much for your time and help!

Hey Rubyrose, I posted a very similar scenario to yours in a post asking about potential carrers for young CF adults. I worked as an RN in surgery for many years then went back to grad school and landed a clinical analyst job in our Analytics Division. Curious what type of work do you do within IT?
My daughter is 13 with CF. She is very lonely and isolated due to her illness. She would like to have a friend that also has CF. Her name is Annabelle and she can be reached on FaceTime at (606) 483-6707.
Hey Millie! My name is Sophie (I’m 15) and I’m looking for someone to talk to who also has CF. Reach out if you want my contact info. Hope you’re doing well.
Hi! We are new to this website. I have a 9 year old son named Aiden. Doctors told us a few years ago that they thought he had CF. He’s had 3 normal sweat tests and genetic testing revealed S1235R and 7T. I noticed you also have these mutations. I’m told these are non disease causing but since he “clinically” has cf they treat him as such. We see a pulmonologist but don’t go to a cf clinic. He is colonized with pseudomonas, has a gtube do to not gaining weight, and for the last 3 years has gotten “tune ups” regularly. They have also told us we needed to exercise cf precautions at school. I’ve never been able to contact anyone with the same mutations as him so I’m excited to visit with you. Hope things are well!