Columns

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…

With the dreaded cold and flu season upon us, my household is gearing up to protect ourselves and avoid sickness as much as possible. Everyone with cystic fibrosis is aware of how a simple cold or flu can evolve into a much more serious problem with lasting consequences. We all…

It’s World Mental Health Day! Well, it won’t be when you read this. But it is as I write this. I posted some confessions on Instagram about my struggles with mental health, and I got a bunch of incredibly kind messages from friends saying they…

If you read my column last week, you know I care a lot about the interpretation of words. The word “cure” holds tremendous gravity in the cystic fibrosis community and for scientists. It’s the Holy Grail of CF science and what we ultimately work toward. CF is a progressive…

I’ve been single for a year now, and I’m darn proud of it. I didn’t think I could do it, and I’ve grown so much because of it. From ages 17 to 24, I was with a wonderful person. It was us against the destructive titan, cystic fibrosis.

Speaking as a writer: Words wield heavy power. Our written and spoken words are capable of mightiness. They can impart life-changing wisdom or inflict pain, whether intentionally or unintentionally. I feel I must be transparent about life with cystic fibrosis so that I can use my experiences to share learned…

Fall 2010 I’ll never forget the morning I couldn’t understand what my friends said as we waited for classes to begin. I’ll never forget calling Mom, phone pressed to my right ear, and not understanding what she said, either. Or my heaving sobs as friends…

I’ve noticed that there are two schools of thought in the CF community about discussing our life with a chronic disease. The first: If we expect others to be considerate and respectful of our circumstances, we must educate them about the intricacies of life with CF. The other: It’s not…