Columns

It’s time to move forward. The recent approval by the U.S. Food and Drug Administration of the triple-combination treatment Trikafta (elexacaftor, tezacaftor, and ivacaftor) has sparked hope in the cystic fibrosis community. While it’s not a cure, the therapy has shown to have positive…

Last week, the Cystic Fibrosis Foundation launched a new initiative called “Path to a Cure.” A press release called it “an ambitious research agenda to deliver treatments for the underlying cause of the disease and a cure for every person with cystic fibrosis (CF).” It added: “The Foundation is…

Two of my friends are dead. And I’m scared. Recently, I lost two friends on the same day. One was in love with a dear friend of mine — he has a milder form of cystic fibrosis, and they successfully loved and lived for years. The other I texted nearly…

In my senior year of college, I wanted to be just like Dad. He’s a courageous traveler who has filled many passports and has eaten all sorts of weird foods. The problem was that traveling kind of scared me. No, it really scared me. It seemed like every plane…

Lung function — typically measured by forced expiratory volume in the first second (FEV1) — is the boogeyman for people with cystic fibrosis (CF). Whether it’s our lung function, our weight, our BMI, our liver levels, or our glucose levels, our lives are an assemblage of numbers, values, qualifiers,…

9 a.m. I should be starting my day with the smoothie bowls that are stocked in my freezer. You can add gluten-free granola and honey to the pre-blended nutrients, but granola doesn’t sit well with me. I ate a protein bar and a banana on the morning of my…

My head is in the clouds right now. I took a heavy sleeping aid about half an hour ago, and wooh, that stuff hits fast and hard. The sleeping aid has become necessary some nights. I don’t know how to sleep when my phone keeps buzzing, buzzing, buzzing. I pick…

I entered through the hospital doors and walked about 30 feet before becoming completely out of breath. I had a split second of panic before I remembered the heavy backpack I was wearing. I called my mom, who was ahead of me. She turned back and took my backpack from…

A few weeks ago, an article with the headline, “Vertex sinks on reports of deaths of patients taking cystic fibrosis drug,” circulated online. The medication in question was Symdeko (tezacaftor/ivacaftor). I saw that the article was being shared among my many friends with cystic fibrosis (CF) and within…

I’m sorry. I’m sorry for being sorry. Do you ever feel like all you do is apologize? It’s what I do best, and for that, I’m sorry. My friend Maria said something the other day that stopped me in my tracks: “Disabled and chronically ill people don’t need to…