Brad Dell,  —

James and Charles Dunlop had already done plenty for the cystic fibrosis community as the founders of Ambry Genetics. Their diagnostics company was the first to do a full CF gene analysis that looked at the entire CFTR gene in 2001, which includes about 1,300 known mutations. The brothers…

I was repulsed by my body. My arms were scarred and barren of muscle, thin as twigs. They hung from a bumpy, pale torso — bumpy from the ribs that protruded, the port-a-cath that sat beneath pockmarked skin, and the rubber feeding tube above my belly button.

Gaining weight can be just as difficult as maintaining lung function for many with cystic fibrosis. Most have heard people without CF joke that they wish they had our problem with gaining weight. But for those who experience the struggle of malnourishment and unstable weight, we know…

It’s interesting to see characters with cystic fibrosis in popular media — even if the disease isn’t always portrayed realistically. Check out these films, shows, and books where cystic fibrosis appears, and how the disease is depicted in each one: Foreverland | Film | 2011 In…

After several decades of research into cystic fibrosis, there’s a wealth of weird information out there about the disease, its common bacteria, and medications. How many of these did you know already? 1. It is hypothesized that cystic fibrosis genetics have resistance to infectious diseases such as tuberculosis,…

I’ve seen videos of people with cystic fibrosis, messaged other patients on the internet, and knew some as a child. But since the early years I barely have any memory of, I haven’t verbally spoken with a CFer. I had a phone interview today. The interviewer kept…

Cystic fibrosis researcher Joshua Stokell, Ph.D., left behind the most intensive sampling of a single CF patient — studies of his own lungs’ bacteria — when he passed away in June 2015. His gaming team, Dads of Destiny (DoD), is determined to continue Stokell’s legacy of research by donating…

I crawled into my closet and pulled out a dusty, battered Ultimate X-Men: Vol. 1. Sunray slivers peeked through the slightly-ajar door, lighting sections of the comic book as I read beneath my jackets on their hangers. I was in 10th grade and had just lost the…

Twenty-four years of living with cystic fibrosis allows for a plethora of learning lessons — mostly through mistakes I’ve made. There are many things I wish I had done differently regarding my health to improve the effectiveness of my treatment. If I knew then what I know…

Many label their lives with cystic fibrosis a “battle.” I prefer “war.”* There’s the daily grind: The clinic visits are strategic meetings. The treatments are patrols. The two-week antibiotic courses are skirmishes. Then there are the defining moments of the war — the brutal flare-ups when bacteria or…