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Isolation runs rampant in the rare disease community. As a byproduct, so does feeling alone. My journey with cystic fibrosis (CF) has been challenging, and I’ve often felt like I’m the only one fighting this disease. Thankfully, I found camaraderie through community right before my double-lung transplant five…

Before I wanted to be a baseball player, I longed to be a film director. This came from watching movies by Steven Spielberg and Robert Zemeckis when I was growing up. I even tried acting, playing the role of an orphan in the musical “Oliver!,” based on…

It’s 2006, and I’m with my uncle and cousin at the ESPN Zone in New York’s Times Square. My uncle and I are watching the New York Giants have yet another meltdown at the end of a football game against the Tennessee Titans to continue a losing streak.

The day my husband and I recited our vows at our wedding, I pictured our perfect future together, just as I had many times before: two kids, ideally a boy and a girl, and a house, maybe even with a white picket fence. Ah, to go back to the days…

Organ donors are ordinary people who make an extraordinary impact. Each day I’m personally reminded of how one decision can change a life. My life was saved because of my donor, who made my double-lung transplant possible five years ago. Each breath I take reminds me of the…

That which is visible can more easily be defined than that which is not. Of course, while the contents of a book can be different from its cover, readers can usually gain a sense of what the book might be about just by looking it. The same cannot be said…

It’s Friday, and after a long morning of stressful clinic calls that included coordinating appointments, negotiating a telehealth option amid the ongoing COVID-19 pandemic, and asking for and hoping a prior authorization drops on my Trikafta (elexacaftor, tezacaftor, and ivacaftor) before I need the refill, I decide I deserve a…

Every morning, my grandfather used to run for the train he’d take to work. His job was in the boiler room of the American Museum of Natural History and adjacent Hayden Planetarium, making sure temperatures within the exhibits were perfect. Not bad for a guy with…

When I was pregnant, we learned that our unborn baby likely had cystic fibrosis (CF). I immediately fell into a deep depression. I didn’t talk to friends and family. I felt like no one could possibly understand what I was going through. I became agoraphobic, only leaving my house…

Due to cystic fibrosis, I’ve been steadfastly focused on my health my entire life. There hasn’t been a time when I wasn’t thinking about my health. As such, I’m constantly assessing how my surroundings will affect my health, conducting continuous health maintenance, and ensuring all of the elements of…