Columns

We typically celebrate an anniversary, but when you live with a chronic health condition like cystic fibrosis (CF), your relationship to certain days on the calendar can be a bit more complicated. They may not be milestones to celebrate, but they can still serve as reminders. I’m thinking…

Mornings with my daughter, Jasmine, who passed away at 27 due to cystic fibrosis, always began quietly. She would wake up before me, her hair still wild from moving around in her sleep. I would find her sitting on the edge of her bed, feet dangling, already thinking about…

At this point in my life, I find that the more awkward a situation is, the better. Maybe it stems from a lifetime of awkward moments — most likely. Do I make awkward situations even more awkward? Absolutely. Being born with a chronic illness — cystic fibrosis (CF) —…

A difficult aspect of grief is that, at some point, we may cope by becoming numb and calloused. This is not a weakness, but rather a deeply human response. We are a resilient species. We choose to love intensely, even knowing that such love may end in incalculable pain. After…

My relationship with sleep has always been complicated. Sometimes I wait until the very end of the day, when I’m so exhausted that I just collapse into bed. Other times, I toss and turn, adjust my position 35 times, and eventually fall asleep a few hours later. I’m also prone…

Note: This column describes the author’s own experiences with Trikafta (elexacaftor/tezacaftor/ivacaftor) and Orkambi (ivacaftor/lumacaftor). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Last Friday, I attended a Rare Disease Day event hosted by the National Institutes of Health (NIH)…

I lost my daughter, Jasmine, to cystic fibrosis (CF) at age 27, but we battled and lived with this rare genetic disease since before she turned 2 years old. In 1998, when Jasmine was 6, our mornings always started early. The kitchen was never quiet for long — it…

Five and a half years ago, I woke up from a double-lung transplant breathing as I hadn’t been able to in decades. Not just the volume or ease of it, but the absence of the fight that I’d become used to with cystic fibrosis (CF). The lungs just worked.

I live with a rare disease. It seems strange to say that because it’s not so rare to me. Living with cystic fibrosis (CF) is the only life I’ve ever known. When I was born, researchers hadn’t yet discovered which gene was affected by CF or what chromosome…

I struggle with needing help and not having answers. I’ve always wanted to be calm and collected in challenging situations. I don’t like feeling panicked or out of control, which means I don’t like expressing emotions before I’ve had time to process and understand what I’m feeling. Over the years,…