Columns

Cystic fibrosis (CF) has a way of stripping one’s agency and limiting control over circumstances and the future. It is difficult, isolating, and can lead to dark places. For me, advocacy has been a balm that tempers feelings of anxiety, hopelessness, and isolation. Over the years, I’ve served…

One month ago, my daughter got married. I woke up early that morning and took a long, slow, deep breath. For someone who has lived with cystic fibrosis (CF), that simple act felt like a miracle. But the real miracle was still ahead — walking my daughter down the…

Artificial intelligence (AI) is just about everywhere right now, capturing the world’s attention and economic markets. Along with near-daily headlines about what AI promises to do for — or to — humanity, there’s also been some very promising advances in the use of AI in medicine. It seems that…

Note: This column describes the author’s own experiences with prednisone. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Current situation: I’m sitting in bed eating potato chips and drinking ice-cold ginger ale while my husband is fast asleep…

Throughout my life, I’ve felt comfortable self-disclosing to schools and employers that I have cystic fibrosis (CF). Self-disclosure — defined as “the sharing of personal information with others that they would not normally know or discover” — has allowed me to claim agency and decide what I want shared…

In my life with cystic fibrosis (CF), the antibiotic tobramycin has saved my life countless times. But 15 years ago, it took something from me that I’ll never get back. Toxicity from the drug permanently destroyed the tiny hair cells in my inner ear, leaving me with vestibular…

A few days ago marked what would have been my sister Alyssa’s 37th birthday. To pay homage to her this year, I’m reflecting on what it’s like to have cystic fibrosis (CF) myself as well as a sibling with CF. When people learn that individuals with CF are advised…

Living with cystic fibrosis (CF) and a double-lung transplant often feels like inhabiting two worlds simultaneously. There’s the extraordinary world, filled with medical miracles, precisely managed medications, and a body that has defied more statistics than I care to count. Then there’s the ordinary world, where sometimes all I…

Have you ever been asked why your parents didn’t undergo prenatal genetic testing? During a hospitalization for cystic fibrosis (CF) in my early 20s, a nurse asked my mom this question right in front of me. I rolled my eyes because I’d heard it before, although it didn’t take…

Hope is something I have often reflected on throughout my life. In fact, my first tattoo was of a Latin phrase commonly referenced in the cystic fibrosis (CF) world: “Dum spiro spero,” which means “While I breathe, I hope.” But my perception of that phrase has changed over…