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Picture the scene: You’re standing in front of a sea of faces about to present something. You’re a woman who’s 5 feet, 2 inches (OK, 5 feet, 1½ inches) tall. Oh, and several of your major organs don’t work properly. While a healthy person may…

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…

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,…

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,…

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…

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…

“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…

Dear “How are you feeling?” folks, Those of us with a chronic illness hear repeatedly — and secretly dread — questions such as the following: “How are you feeling? How have you been doing? Are you feeling any better? Are you hanging in there?” We try to smile and reply…

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…

Growing up with a terminal disease, it was not a secret that one day I would become disabled. What I didn’t expect was how messy the process would be. There’s no handbook or guide about how to become disabled. It’s not as though one day you wake up…