Columns

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…

Well, it finally happened: Twenty-two months after my double-lung transplant, I finally got sick for the first time. I gotta say, with a suppressed immune system, illness isn’t so lovely. I saw the docs last Tuesday, and they ran a panel of tests. No…

Second in a series. Read part one. 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 continue a series with short overviews of interesting posters from each…

First in a series. The poster sessions at the North American Cystic Fibrosis Conference (NACFC) in Denver this month included many interesting branches of the wonderful world of CF research. In this column, I’ll share a short overview of an interesting poster from each topic to showcase promising developments.

The 2018 North American Cystic Fibrosis Conference (NACFC) in Denver was rad, huh? The Cystic Fibrosis Foundation (CFF) is making great strides in the inclusion of patient voices, which has led to a selection of initiatives based on our feedback. Over the next five years, the foundation…

As much as we resist the idea, cystic fibrosis can become a defining part of identity; a lifestyle that we’re forced without choice to live day in and day out. A choice exists, I presume; we have the choice to take care of ourselves, to take our medications, to do our…

As readers of my column, you know that I write about the journey of life and the emotions of living with cystic fibrosis (CF). This week, I want to address a topic that makes me sad and frustrated. I’ve made it my mission to shine a light on…