Blue-Eyed Breather

Dear friends and family, It's May 2020, which means it is another CF Awareness month and another time to talk about all the amazing things happening in the CF world! This has been a very good year in the CF community. In October of 2019, Trikafta was approved by the FDA for all people with CF with at least one copy of the dF508 mutation. 90% of people with CF have at least one copy of this specific mutation. This is a HUGE deal in the CF community because it is one of a handful of drugs that addresses the underlying cause of CF and the only drug that such a huge percentage of people with CF can take. Trikafta is a total game-changer for so many, including me. I have gained stability, I require fewer IV antibiotics, I gained lung function I thought was long gone, and I feel like I can plan things in my life again. The hard work of the CF Foundation, willing researchers who continue to search for a cure and medicines that will increase quality of life, and the generous donations fr...

It's been a while since I've written. To be honest, I've missed it. Not for the likes or the comments, but because I do my best processing through writing. And, as we all know, there's a lot to process right now. I decided now would be a good time to jump back into writing while I have the time. It feels like the world is in chaos. Coronavirus has lots of people on edge. Many of us are quarantined to our houses. Scientists are telling us it's going to get worse before it gets better. I saw today that we might have to practice social distancing for a year or longer until there is a vaccine. A year?? Humans are designed for community and to be around one another. How are we supposed to live like this for a year or longer? Right now, we are just starting to figure out what it means to live in the time of coronavirus. There is still so much unknown, and that leaves many of us, myself included, feeling anxious. So today, I wanted to share some positive things I've ...