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…
Mutations & Conversations - a Column by Tré LaRosa
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…
Throughout my life, I’ve felt comfortable self-disclosing to schools and employers that I have cystic fibrosis (CF). Self-disclosure — defined as “the sharing of personal information with others that they would not normally know or discover” — has allowed me to claim agency and decide what I want shared…
A few days ago marked what would have been my sister Alyssa’s 37th birthday. To pay homage to her this year, I’m reflecting on what it’s like to have cystic fibrosis (CF) myself as well as a sibling with CF. When people learn that individuals with CF are advised…
Hope is something I have often reflected on throughout my life. In fact, my first tattoo was of a Latin phrase commonly referenced in the cystic fibrosis (CF) world: “Dum spiro spero,” which means “While I breathe, I hope.” But my perception of that phrase has changed over…
The benefits of being in nature are well-documented. There are the physical benefits, such as improving blood pressure and immune activity. And then there are the mental benefits, with people spending time in nature seeing reduced rates of depression and anxiety and increased vigor. These findings don’t…
My friend Steve Silberman died a year ago on Aug. 29, 2024. I was familiar with Steve before he knew me. Steve had written a highly popular and applauded person-centric history of autism titled “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity.” His writing, much like my…
Your CF Community
Visit the Cystic Fibrosis News Today forums to connect with others in the CF community.