Brad Dell,  —

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?…

There are two great fears in a person’s young life: “The Talk” and the Boogeyman. The Transplant Talk is an intertwining of the two for many with cystic fibrosis. My dad was deployed in Iraq when I hit puberty, so the duty of The Talk fell to my…

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…