Advocacy and Abnormality – a Column by Kristin Entler

Returning to the Clinic Means Lung Test Anxiety Again

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…

Trusting a Future Where I Do More Than Just Survive

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…

Questioning the Psychology of Need

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…

We Need to Reframe Freedom Amid the COVID-19 Pandemic

I didn’t want to write about this yet. Of course, I also thought COVID-19 would be over by now. From the very beginning of the pandemic, I had hoped, like so many others in the chronic illness community, that things would go differently. I always knew the pandemic wouldn’t end…

Writing Through It: Why I’m Here

It’s been a long time coming for me to write directly about my life with cystic fibrosis in a body that gives me no choice but to balance illness with society’s definition of a normal life. I am here, in part, to be honest, and to find connection within that…

Featured Column

What It’s Like to Have a Family Member in the ICU

Main graphic for "Safe and Sound," Cystic Fibrosis News Today, by columnist Shelby Dell
Five years after her brother, Bradley, fought for his life in the ICU, columnist Shelby Dell reflects on how his hospitalization affected her.

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