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)…
Mutations & Conversations
— Tré LaRosa
Tré LaRosa is a scientific project manager, patient advocate, and writer. He has cystic fibrosis (CF) and carries two copies of the F508del mutation. He’s been on Trikafta since 2019. He writes about science, living with CF, grief, family, and everything in between in an effort to get you thinking about what it means to be human. He lives in Arlington, Virginia with his fiancée Jessica and their two wonderful, lazy dogs, Duncan and Leo. He enjoys playing sports, being outdoors, and reading — and especially buying more books.
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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…
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,…
Over the years, I’ve spent a lot of time on the phone with various organizations involved in my healthcare. Probably the most frustrating thing is having to cycle from one person to another, who then directs me back to the first person I talked to. It seems like it’s only…
While the results of a recent study investigating how financial stress affects the cystic fibrosis (CF) community are alarming, they’re not surprising. I think it’s a perfect example of why this issue needs to be taken more seriously. For the study, published last month in the Journal…
Eight years ago, I walked down the corridor that connected the hospital to the clinical research wing. I arrived at what felt a bit like a movie set, but was actually the floor where clinical trial participants would receive intravenous infusions of either a placebo or the investigational drug. It…
I recently watched a film that depicted a harrowing scene between the protagonist, a prodigious graduate student, and his physician. In the scene, they sit in a sterile, halogen-lit corridor as the physician shares the devastating news that the student has amyotrophic lateral sclerosis (ALS). Much like cystic…
I stared at the screen in disbelief. My lung function had declined more than 20 percentage points. I was stunned. I had undergone hundreds of pulmonary function tests before, and even though I wasn’t feeling great, none had shocked me like this one. I knew I’d need antibiotics, but…
The year is 1955, and a group of parents, including the late Doris Tulcin, decides to create an organization dedicated to improving care for children with cystic fibrosis (CF). That organization, the Cystic Fibrosis Foundation (CFF), continues to thrive today. The year is 1989, and Lap-Chee Tsui, Jack…
Ironically, I thought about the subject of this column — the importance of rest — a couple of weeks ago while running in Seattle, a city known for its frequent rainfall. I was preparing for the Virtual Marine Corps Marathon 10K (MCM10K), which was scheduled for the following day. I…
Cystic fibrosis (CF) has a way of stripping one’s agency and limiting control over circumstances and the future. It is difficult, isolating, and can lead to dark places. For me, advocacy has been a balm that tempers feelings of anxiety, hopelessness, and isolation. Over the years, I’ve served…
Artificial intelligence (AI) is just about everywhere right now, capturing the world’s attention and economic markets. Along with near-daily headlines about what AI promises to do for — or to — humanity, there’s also been some very promising advances in the use of AI in medicine. It seems that…
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