Brad Dell,  —

In their minds, cystic fibrosis patients are cycling through an African safari, exploring the animals and environment. In reality, they’re sitting atop a bike machine with a thick, black visor engulfing half their face. The University Hospital Llandough in the U.K. is…

“Cystic fibrosis is a genetic lung disease.” That’s an accurate statement, sure. But it doesn’t reflect the diversity of patient cases — the myriad mutations that cause each case of CF, and the unique medical contexts that shape those cases. And, as all CFers know, the mutations affect…

Hanging from the wall of Vertex Pharmaceutical’s Boston office is a massive set of sculpted lungs — pink and red, branching out with wide airways. The sculpture (made of foam, corrugated plastic, and glitter) is titled “I Want More Air!” As creators of game-changing CF drugs Kalydeco and…

I’ve gone through life afraid of numbers. Not just math, although I’m really terrible at that. Numbers like “37”: the life expectancy of someone with CF, a number that was even lower when I was growing up. Numbers like “4”: the amount of antibiotics needed to…

I walk through a football stadium. I catch a whiff of the cotton candy and am smacked back to every procedure I’ve had, breathing in the stale cotton candy-scented anesthetic before I drift to nothingness. I am so overcome with fear that I feel like dropping to…

Cystic fibrosis care has seen such rapid advances that the average CF patient has likely seen a dramatic evolution in treatment strategies in their lifetime. Here are some of the biggest milestones that shaped modern-day CF treatments. (Dates are when these therapies and ideas were adopted. Many are no longer…

Emily Lyons hasn’t stopped thinking about her sister Julia since she passed away from cystic fibrosis in 2011 — and she doesn’t want to. So, she created JWLS, a timepiece company with a set of lungs as its logo. Emily donates a portion of proceeds from watch sales…

I won’t lie. The first two months after my double-lung transplant were rough. I wasn’t in much pain, but my body was struggling to adjust to the cornucopia of transplant drugs, and I experienced the torment of withdrawal from the powerful painkillers I was on. After those…

Last week I wrote about how lung transplantation isn’t the Boogeyman I once thought it was. After I had done my research, I finally considered being evaluated for a transplant. My doctors and I expected it to be at least a couple years before I’d need…

“There was a girl I was very interested in,” says Gunnar Esiason. “We were hanging out and, it’s a long story, but my feeding tube exploded on her.” “I was dating this guy, and he saw my port-a-cath and goes, ‘Oh my God, are you ok?…