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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,…

Cystic fibrosis (CF) doesn’t take breaks, but my late daughter, Jasmine, would have none of that. Even as a child, she was a pro at fighting this rare, genetic illness. Children are so much more resilient than we realize. Her joy in life taught me not to focus only…

Five and a half years ago, I received the gift of a lifetime: a double-lung transplant that gave me back my breath and, in many ways, my life. After decades of fighting cystic fibrosis (CF), I finally felt free. And then reality set in. Nobody tells you that a…

I’m not a jerk; I’m just tired. Admittedly, though, I feel like a jerk sometimes. My eyes widen at the number of private messages that flood my inbox. I know they’re from sweet people who need support and encouragement. “I’ll tackle them another day,” I say aloud. But days can…

“You might live long enough to finish college, maybe even get married, but …” I imagine this is what the textbooks used to say about cystic fibrosis (CF) when I was in college. While I heard such things at medical appointments, I refused to let that narrative define my…