Columns

It’s the happiest place in the world. Disneyland. I am afraid. Trembling, I slip deep down into the plastic seat molded into a massive seashell on wheels. The darkness of the man-made cavern is interrupted by a video on the ceiling that makes it feel like I…

The period between Halloween and New Year’s — what I usually call “the Holidays” — is the time of year I’ve always most enjoyed. Christmas music, chilly weather, early evenings, annual reunions with family — all of that made waking up each day my absolute favorite. I would reflect on…

I peered into one of the incubators that stored my petri dishes for 24 hours, anxious to see whether I would discover discoloration and unevenness on the surface, which would have indicated that my experiment produced favorable results. I wanted to see a visual representation of whether manuka…

As I’ve grown older, I’ve become a self-advocate, taking initiative when possible. I’ve developed a close relationship with my care team, which I believe is crucial for adults with CF who want to become authorities on their care. I took a sociology class in college on healthcare ethics. We…

It’s that time of year when we sit around our tables with carved turkeys, mashed potatoes, and a healthy dose of gratitude in honor of Thanksgiving. Sometimes I struggle to feel grateful. While gratitude may not come easily, the behavior can be learned and reinforced by making it part of…

I parked outside a library, where I’d planned to work for the day, at 7 a.m. in freezing 40-degree weather (I was raised in Hawaii). The library wouldn’t open for four more hours, and I was too tired to drive elsewhere, so I turned on my car’s heater…

I’ve been on Orkambi (lumacaftor/ivacaftor), a cystic fibrosis transmembrane conductance regulator (CFTR) modulator, for just over three years now. My lung function has remained stable during that time. CFTR modulators are medications that “fix” the defect that causes cystic fibrosis. “Fixing” the defect means improving CFTR function. A person…

The trailer for “Five Feet Apart,” the spring 2019 film about two people with cystic fibrosis (CF) falling in love despite cross-infection guidelines, dropped on social media this month. Like every other person with CF, I clicked on the trailer eager to see what my disease looks like…

The cystic fibrosis community gets buzzing at the news of a successful Vertex trial or when a well-respected researcher even casually mentions the word “marijuana.” When a trailer for a fictional romance movie about cystic fibrosis was released, our community was more of an angry swarm than…

Last in a series. Read part one and part two. The poster sessions at the North American Cystic Fibrosis Conference (NACFC) in Denver last month included many interesting branches of the wonderful world of CF research. In this column, I’ll finish with a series of short overviews of interesting…