Disease disclosure is exactly what it sounds like – telling someone about your illness. We’ve spoken briefly about disease disclosure on here before, but I want to dive into it a little bit. One of the live-streamed sessions at NACFC called disease disclosure a “skill.” Mind you this was coming from someone on the care...
Continue reading...
Five Feet Apart is the forthcoming teen romance film attempting to do something positive for the cystic fibrosis community. The problem is…. we’re still trying to figure out what that “something” is. The damn movie isn’t even out yet and it’s already causing a divide in the CF world. It’s been a super hot button...
Continue reading...
Amy closes up her Drug Development Wednesday column with describing how people with CF who have Medicare without Medicaid, Low Income Subsidy, or another secondary insurance can wind up paying a substantial amount for CFTR Modulators. These folks are DENIED manufacturer co-pay assistance because of a long standing federal law The last two articles I spoke about...
Continue reading...
It’s been awhile since we’ve had a Monday Morning Thoughts…. such is life. Welcome back to my stream of consciousness! I was updating my résumé over the weekend, something I like to do periodically, because YOU NEVER KNOW, and while I was doing it, I sort of had an existential moment. Why do we encourage...
Continue reading...
Darcy is back with her guest column to chat with you about talk to kids about CF! In the spirit of Halloween, please take note of the above picture of one of my first Halloween costumes from my childhood! This post is inspired by Megan Barker, founder of Project CF Spouse, who I was fortunate...
Continue reading...
I LOVED tuning in to the North American Cystic Fibrosis Conference live stream this past week. It was amazing to be a fly on the wall listening to everything that’s going on in the world of cystic fibrosis, and not just the medical research! Some of the qualitative programs were just as impactful as the...
Continue reading...
The early streams from day two in Denver were a bit science heavy, especially for a Friday, BUT this science affects us, so let’s go through it. Yesterday morning’s plenary about inflammation was a giant shift away from the constant stream of modulators that has been coming from NACFC over the past few years. We’ve...
Continue reading...
