Our hearts stopped when we first heard that our grandson, Jase, had cystic fibrosis. We didn't even know what it was. However, we have learned a lot along the way and have gotten used to rolling with the ups and downs of this disease.
When my wife convinced me to undertake a hike up to Angel's Landing, I pictured the physical challenge of it, not the friendship we would develop with another couple on the way up.
After starting Trikafta, I decided to try running again, and I grew to love it. Because of COVID, I had to conduct my own races in 2020, but now I have joined a running group and am preparing to run my first marathon at the end of September.
I went from knowing nothing about cystic fibrosis to having the three most important people in my life diagnosed with the disease. I was shocked to learn that not only did my two children have CF, but also my husband had it.
My daughter, Ellie Frances, has faced a host of medical problems. Living with cystic fibrosis helped prepare me for the difficult decisions I've had to make along the way.
At various points in my life, I have faced ableist comments or reactions to my cystic fibrosis treatments, which have greatly affected me. I hope this blog post makes people more aware of the language they use toward people with chronic illnesses.
My daughter, Desi, recently started school. Here's what we did to prepare her to manage her cystic fibrosis and navigate the COVID-19 pandemic -- and what we learned in the process.
When I was in high school, I tried my best to hide my CF from my friends. When this put my health at risk, I knew I had to find friends who would accept me and to become a better advocate for myself.
My younger sister and I both have CF. Growing up, I tried to be a role model for her in managing the day-to-day challenges. Today, she is the one inspiring me.
Having to isolate from our loved ones after the birth of our first child -- right as the COVID-19 outbreak hit our community -- was doubly difficult, but with a little education, our support network came through for us.