Ella is a writer, patient advocate, and scientist with cystic fibrosis. She was diagnosed with CF at 18 months old and is now in her late 20s. She holds a degree in biology from Virginia Commonwealth University and works part time as an environmental microbiology lab manager. Over the last few years, she's become deeply involved in the CF community via advisory and research committees while also serving as a director for the U.S. Adult CF Association. She's from Richmond, Virginia, but is of Hungarian descent. She loves the ocean, traveling, spending time outdoors, practicing makeup, and eating her favorite dessert, crème brûlée. Follow her travel and life experiences on Instagram @thisgirlella.We are currently experiencing something unlike anything we have seen before: a coronavirus pandemic whose magnitude is unprecedented in modern history. Two weekends ago, I was still celebrating St. Patrick’s Day at bars with my friends. By then, people were wary. I was advised against going, but having the mindset…
Last week led me to reflect on how things change with time. Looking back on the obstacles I have overcome and the stepping stones navigated help me to appreciate the present. Last Wednesday I drove home from a checkup at Duke University in Durham, North Carolina. My lung function was…
Two weeks ago, I watched a livestream of the North American Cystic Fibrosis Conference (NACFC) as I popped Trikafta (elexacaftor/tezacaftor/ivacaftor) tablets out of their blister pack. Francis Collins, one of the researchers who discovered the cystic fibrosis transmembrane conductance regulator (CFTR) gene, was singing to an audience of…
On some days, the motivation to pedal a stationary bike and feel the burn and breathlessness for 20 straight minutes is buried under a layer of mucus lining most of my airways. Pulmonary rehab five days a week has tuned my body so that I can dramatically feel the weakness…
A truth binds the lives of two women who have never met. One sees into the other’s soul through her writing — for both women, cystic fibrosis (CF) has been their greatest blessing and most dreadful curse. Reading Mallory Smith’s posthumous memoir, “Salt in My Soul: An…
Our society places great emphasis on success through careers. Whenever we meet a stranger, one of the first questions we ask is, “What do you do?” I feel this pressure despite my awareness that my illness makes it difficult even to predict what the next few months might bring. The…
“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…
I peered into one of the incubators that stored my petri dishes for 24 hours, anxious to see whether I would discover discoloration and unevenness on the surface, which would have indicated that my experiment produced favorable results. I wanted to see a visual representation of whether manuka…
As readers of my column, you know that I write about the journey of life and the emotions of living with cystic fibrosis (CF). This week, I want to address a topic that makes me sad and frustrated. I’ve made it my mission to shine a light on…
BreatheCon is a free online conference hosted by the Cystic Fibrosis Foundation (CFF) for CF patients 18 or older from across the globe to share life experiences, ideas, and encouragement. I have attended this incredible annual event since its inception in 2016. It has been uplifting to…
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