I have a story for you. In my teens, I often ditched CF treatments to explore storm drains beneath my Hawaii suburban neighborhood. When entering the concrete tunnels (maybe 15 feet in height and width), they’re so dark it feels like you’re stepping into nothing, a vortex. Many…
Columns
If you’ve ever met more than one person with cystic fibrosis, it’s likely they had very different experiences than you. First, their approach likely will be different; chronic disease affects everyone differently mentally, so some are vocal and “embrace” it, while others are quieter and choose to consider it a…
Hello there, and welcome to my column! This is a place to talk shop. Work. Jobs. Careers. Whichever term you prefer. In the not-too-distant past, I was a wide-eyed, coffee-swilling exec with a penchant for checked trousers. I worked in a trendy digital agency in London. (Trendy enough to have…
On the night of Jan. 15, 2016, nurses rolled me in for surgery. I rolled out on Jan. 16 with a donor’s lungs. It’s been two years packed with awe. I love my post-transplant life. I’ve traveled all over, picked up new passions, and…
I ecstatically joined Cystic Fibrosis News Today in September because it was my first major opportunity to generate CF discussion. In this column, I’ve written about what a cure might actually mean for the community, why it’s important for parents to empower their children with CF, the…
A friend sat with me above heaven, a sapphire ocean embracing two lush islands and the greater island beneath our butts — Oahu. On that mountaintop, I rambled about finding meaning in all things. Lanikai Pillbox Hike. (Photo by Brad Dell)…
One of my earliest memories from elementary school was leaving class a little early before lunch to go to the nurse’s office to take my enzymes, always accompanied by a school peer. I wasn’t allowed to bring my enzymes with me to school because entrusting a young kid to take…
When Serena Lawrence, the late Bionews senior columns editor, responded to my email about potentially writing for Cystic Fibrosis News Today and promptly offered me a columnist position, I was awestruck. This was the first concrete (read: monetary) endorsement of my writing. My hope with this column was to…
It’s true that having a partner in life can be a gift. Sharing the celebrations and sorrows makes life sweeter, especially when you’re living with CF. However, many people with CF struggle with the guilt of asking someone to tackle CF life alongside them. A relationship that includes CF almost…
If you keep up with CF research, you may have seen the news about Phase 3 of the triple combination Vertex therapies. In these results, patients had a robust lung function boost after trialing a triple combination therapy treatment. More importantly, these results were tested in a broad population…
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