Since August, I’ve been irritable, in hermit mode (distressing for an extrovert!), a little depressed and unfulfilled, and having difficulty sleeping. Plus, I’ve been urinating about seven times nightly, which sounds funny but is a special kind of torture. Leading up to 2020, people shared diaries on Reddit tracking…
Columns
It’s a new year. For many, that means a fresh start. A chance to clear your mind and move past burdens you wish to leave behind. I have never really been into this concept, for no particular reason. However, 2019 was easily the hardest year of…
I’ve found that one of the most fulfilling things I can do in this life is to work toward a better world. It’s why I wrote a column a few weeks ago about building a diverse coalition: The more diverse a coalition working for a better world is, the…
What’s inside me is more than just bones. It’s more than machinery invading foreign lands. Or darkness where organs used to be. Or wrongs and rights to chart and X-ray until I’m nothing more than gray matter with no name. Recently, one of my digital cystic fibrosis (CF) friends sought…
My CF Is My Burden Alone
It is natural that we grow attached to the people with whom we develop relationships. That’s just how it is. There’s not much more to it. The early days of friendship are full of tiptoeing around heavy topics or shying away from our truest selves. That’s what makes developing friendships…
In this column, I want to share the story of a friend who needs a triple-organ transplant: lungs, liver, and kidneys. Before I delve into his experience, I’d like to provide some context about me. I have cystic fibrosis (CF), and through my writing, I was offered a position as…
I am one of the 10 percent. The 10 percent cannot take the new, groundbreaking medication that will hopefully help cystic fibrosis (CF) patients for years to come. Some people cannot benefit from Trikafta (elexacaftor/tezacaftor/ivacaftor) because they recently had a transplant. For others, like me and anomalous genotypes, Trikafta…
I learned long ago not to expect everyone to agree with me. I also realized that disagreement isn’t inherently wrong. From a young age, I was told that I should become a lawyer because I’ve always loved to engage in discussions. In retrospect, those comments might not have been complimentary,…
I miss someone. I don’t even know her … and yet I miss her. I miss the person I do not see on TV, in the movies, or portrayed in most media to date. She needs to be here. And I want to write her. The person I’m referencing is…
I Am Proud to Be Youthful
Loureen and I waited for our travel buddies to pass through airport security. Soon, we would be on a plane to Jordan, where we would provide various forms of support to Syrian refugees escaping civil war. Loureen, wise and a smidge or two older than me, looked me up and…
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Recent Posts
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- Safety concerns halt BX004 phage therapy trial for CF infection December 9, 2025
- Trikafta cuts need long-term for other CF treatments in real world December 8, 2025