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Disabilities typically don’t go hand in hand with celebrations. In fact, messages from the able-bodied have told me my whole life that I should hide the part of me that’s significantly affected who I am today: my disability. As we celebrate Disability Pride Month, I’d like to explain how…

Recently, we went on a trip with my husband’s family to Maui, Hawaii. The trip came after a particularly stressful two months of being displaced from our home. I was looking forward to relaxing and unplugging. But I was most excited about how our daughter with cystic fibrosis (CF),…

During the COVID-19 pandemic, I took up gardening as a hobby. Since I was high-risk for catching the virus because of my cystic fibrosis (CF) and a suppressed immune system from my double-lung transplant, I spent the time isolated. That proved to be the fertile soil to grow…

You’re probably aware of the proverb “It takes a village,” which highlights that having a community is necessary for accomplishing tasks or goals or advancing a cause. For people like me who have cystic fibrosis (CF), making progress with disease funding, research, and care has certainly required a village.

It’s utterly amazing to be able to breathe easily again, almost four years after having a double-lung transplant due to advanced cystic fibrosis (CF). It isn’t easy to put the enormity of the feelings into words, even now. Besides the vague discomfort from a scar that runs from…

As we bring attention to National PTSD Awareness Month this June, I want to shed light on my personal journey of recognizing the symptoms in case you’re in a similar boat. After my double-lung transplant in 2017 due to cystic fibrosis (CF), I remember feeling off but…

For days after having an anatomy scan, I spent most of the time lying on the couch, crying. My eyes were so swollen I had to ice them to keep them open. We were living every parent’s worst nightmare: Our unborn baby had ultrasound abnormalities. The fear of the…

“I’ve never run a race, but I want to,” I said to myself when I saw a registration link for the 27th annual Gift of Life Donor Dash, held last month in Philadelphia. I’m a 52-year-old with cystic fibrosis (CF), insulin-dependent cystic fibrosis-related diabetes, stage 3 chronic…

As we approach the end of Cystic Fibrosis Awareness Month, I want to share some wisdom I wish my younger self would’ve known at the start of my journey with this rare disease. Perhaps you’re in a similar situation and can relate to this advice. Dear younger me:…

Living with cystic fibrosis (CF) feels like riding on a never-ending roller coaster. There are highs and lows, unexpected pitfalls, and twists and turns around every corner. Like a roller coaster, the paroxysmal journey of CF leaves us feeling ill much of the time. But life moves forward,…