Guest Voice

Cystic fibrosis (CF) can manifest in countless ways, and no two experiences look exactly the same. For me, one of the most disruptive symptoms isn’t something that shows up on a pulmonary function test. It’s anxiety. I’ve had respiratory infections and enough IV antibiotics for a…

People say you don’t know what happens behind closed doors. Society only sees what’s on the outside. For those of us with cystic fibrosis (CF), you may see us cough a lot or become out of breath when exercising. Otherwise, though, it may be easy to think, “Oh, CF…

My junior year of high school was marked by an intense peak of financial and emotional chaos. Warnings of eviction were frequent, as was the constant threat of losing electricity, which was essential for my pulmonary therapy vest and nebulizer treatments. Though I was required to be on…

One of my biggest regrets is letting others define my cystic fibrosis (CF) and letting those become bad words for myself. We use labels to simplify and categorize ourselves. Some labels I reach for faster than others, such as oldest daughter, pharmacy student, healthcare worker, dog lover, and…

I grew up in India, where newborn screening and genetic testing weren’t widely available. For years, I lived in uncertainty, never knowing why my body was failing me. By age 10, I was misdiagnosed with tuberculosis — a common conclusion in India when constant coughing and hemoptysis appear. Later,…

Since I was diagnosed with cystic fibrosis (CF) at age 2, I’ve been asked my name thousands of times — at every doctor’s appointment, hospitalization, procedure, imaging, and lab visit. But they’re not asking to know me; they’re confirming that I match the correct birth date and medical record…

Jennifer McKinnon was born with cystic fibrosis (CF), and from a young age, she learned what it meant to fight for every breath. Hospitalizations and countless medications and other treatments became part of her routine, but so did hope, resilience, and an unshakable will to keep going. Tackling each…

Elizabeth Amber, a writer and artist who has cystic fibrosis, had a double-lung and liver transplant in late 2020 at the age of 38. She says she’s always been passionate about personal growth and finding joy no matter the circumstances. She lives in Anchorage, Alaska, with her husband and…