Life with cystic fibrosis can come with many recovery days. But it’s hard for me to avoid feeling guilty when I need time to rest and recharge. Working harder to be more productive and make up for the time I lost at work and with family while resting often leads me right back to my couch and needing to take another day to rest.
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My daughter, Lauren, didn’t know that having a lung transplant would greatly increase her risk for cancer until it was too late. Her death has taught me how important it is to know the health risks faced after transplant and our need to advocate for ourselves.
Since my daughter, Kinley’s, cystic fibrosis diagnosis, I have come to rely on her care team. We have become a true team in Kinley’s care.
Although I admired bodybuilders when I was growing up, I thought pumping iron and building muscle was impossible with cystic fibrosis — so I didn’t even try. After a hospitalization, my passion for fitness was rekindled and I discovered I could build muscle mass and improve my health.
Growing up, I always tried to stay active, but it wasn’t until I was hospitalized that I decided martial arts would be the outlet to keep me healthy and boost my confidence.
We’re highlighting three creators who are helping raise cystic fibrosis awareness. They’re voicing the variety of ways that people experience the disease by sharing a part of their life through their works.
My wife and I knew that following our dream of having children would be difficult, but we would do whatever it takes to grow our family. Despite the challenges we’ve experienced on our in-vitro fertilization (IVF) journey, we will continue to fight to make our dream a reality.
Advocacy is impactful at all ages, but the term can sound intimidating. It implies effort, time, commitment, politics, and publicity. As a 30-year-old with cystic fibrosis, I am currently an active member of the CF community, but I was not always aware of the benefits, power, and impact of advocacy.
I felt unrelenting hope watching the first plenary of this year’s North American Cystic Fibrosis Conference. As I learned about progress that has been made in sickle cell disease, and how those learnings may help us develop a genetic therapy for CF, it showed me that the CF community is supporting people like me who can’t take modulators.
The second plenary at this year’s North American Cystic Fibrosis Conference focused on infections, how they are evolving as CF evolves, and how many people with CF still struggle with infections despite modulators. As a person with CF, the evolution of infection research has accelerated progress in my own life.