While I’ve had the incredible opportunity to participate in clinical trials for cystic fibrosis, my nonsense mutations mean I can’t benefit from modulators. I was inspired by the North American Cystic Fibrosis Conference’s second plenary session, which discussed how we can evolve clinical trials to develop treatments for all people with CF.
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One of the reasons I decided to attend boarding school was to take charge of my cystic fibrosis care. Although I’m not perfect at taking care of myself, I learned that the importance of staying on top of treatments when my parents gave me the chance to fail.
My school gave students a choice of how they want to go back to school: virtually or in person. After considering what made sense for my CF, learning style, and mental health, I decided to attend school in person.
When my university first shut down in March because of COVID-19, I thought our quarantine would be temporary. Now I am contemplating a fully online fall semester. I'm calling on all colleges to continue to accommodate the needs of their high-risk students.
There have never been as many new CF drugs in development as there are today. In the second plenary at NACFC, Dr. George Retsch-Bogart outlined the progress we've made, the road ahead and the changes needed to make it all possible. Read on for my key takeaways.
Annoying though it may have been for me, my mom was determined to raise a daughter who was healthy despite CF. However, we would both soon realize that not every symptom is visible.
I'm a big proponent of participating in clinical research, but COVID-19 made me think twice about participating in a clinical trial that required six hospital visits. However, a screening visit reassured me that the researchers were taking all the necessary precautions.
In the fourth installment of our “Ask a Case Manager” series, we discuss what you should consider when making the transition from high school to college.
As a high school nurse, I've worked hard over the last few years to help my three students with CF navigate school safely. A welcome but unexpected change to my plans was helping one of my students get her very own service dog, Rosie.
The pandemic made me a homeschool teacher last spring. After deciding we would continue homeschooling our kids this fall, we agreed we needed to shake things up. Gone was the cluttered kitchen table where we were doing lessons before, and in its place is a “classroom” we made in our garage.