Advocacy and Abnormality – a Column by Kristin Entler

“Do people with cystic fibrosis really call themselves ‘CFers’?” a friend once asked.  “Some do, some don’t.” I told her about the shorthand terms I’ve seen used in the community, such as “cysters” and “fibros.”  Personally, I’ve always appreciated those monikers for their playfulness, which among many…

Every time I tune into the local or national news, I see another story claiming that everyone will either get or be exposed to COVID-19. And over the holiday break, I learned that five friends — who all had been taking precautions seriously — have contracted…

With the new year looming around the corner, and my school semester crawling to a close, I want to set my sights on all the things I’d like to do next year — attend my first in-person live event since the start of the COVID-19 pandemic, travel to…

This week, the university I both attend and teach at returns from Thanksgiving break, and I’m coming to terms with the realization that I’m afraid of the coming holiday season. This isn’t a new phenomenon; I’ve had a lot of bad luck in my life at the holidays. When I…

I don’t remember why I said what I said to the little girl I had just met on the playground. “I have something called cystic fibrosis.” Maybe I was coughing or short of breath. Or maybe we were exchanging secrets in the tunnel bridge. I don’t remember what game we…

While the world could be more accommodating to people with disabilities, I’ll admit I feel guilty that I’m allowed to register for my college classes 48 hours before my nondisabled peers. This priority access is available to any disabled student, thanks to the Americans with Disabilities Act (ADA),…

“Do all my friends hate me? Or do I just need to get some sleep?” Stand-up comedian John Mulaney’s punchline cuts through the hum of nearby tree frogs. The light from the TV casts a blue glow on my apartment’s white walls, and the volume is set to a whisper…

Through the sliding glass doors and down the stairs of the medical plaza, the midday news played — muted, but with captions running — on the TV mounted across from the reception desk. The water fountain hummed. Where I live, case numbers from the COVID-19 pandemic remain high, and medical…

When the U.S. Food and Drug Administration announced two years ago it had approved Trikafta (elexacaftor/tezacaftor/ivacaftor) for some cystic fibrosis (CF) patients 12 and older, I carried what I considered to be a healthy amount of skepticism about the hype. Articles like this one from The Washington Post…

Three days before my first semester away from home, I sat in a sea foam green chair straight out of the 1990s. I was 20, six months shy of graduating to my city’s adult CF clinic from the pediatric one, and sitting across from a doctor who was telling me…