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CF Science Is Unexpectedly Beautiful

During my sophomore year of college, the background on my computer screen was a cystic fibrosis transmembrane conductance regulator (CFTR) protein, specifically a visualization of its quaternary structure. It looked something like this image. The simplified graphic isn’t an exact representation of what the CFTR protein looks…

Evolving Toward Becoming Visible

Doctors diagnosed me with cystic fibrosis (CF) at 18 months old and I recently turned 29. It’s safe to say I’ve never known a life without it. Growing up, I became accustomed to treatments and pills, my life punctuated by responsibilities in the midst of childhood fun. Despite all that,…

Taking Sick Leave Shouldn’t Cause Low Self-esteem

During these last two weeks, I’ve felt the sickest I have in years. I was admitted into the hospital for a bronchoscopy, intravenous antibiotics, and continuous aminophylline infusion to counteract chest tightness. Amid the nausea, sweats, sleeplessness, pain, bruised veins from botched access attempts,…

Brad Dell: The Man Without Fear, Almost

Imagine how much easier cystic fibrosis (CF) would be if we didn’t have fears. What if we stared death in the eye and laughed? Age 23 was destined to be my last year on earth. Hospital staff had that awkward talk with my family and girlfriend…

CF Forces Me to Have a Different Long-term Outlook

In high school, I aspired to be a pulmonologist for obvious reasons: I wanted to aid the CF community by directly helping patients. It seemed logical. I dreamed of becoming a pulmonologist because my CF doctors had been some of my greatest role models. They were quite literally…

Sharing Life with CF on Social Media

“Ella, you were at a bar?! I thought you were going to the hospital?” I received this perplexed (and perhaps skeptical) text after I posted a picture to social media of me at a local brewery for a cystic fibrosis-related fundraising event. I was smiling with a group…

A Life Intimate with Death Is Not a Life Deprived of Beauty

I gaze through a frosted window on a mountaintop near Lake Tahoe. It’s a church youth group retreat. The students play in the snow, sledding and laughing. I’m sipping Earl Grey while scrawling notes into a journal — combined with snowfall, it’s a recipe for sentimentality. I glimpse…