In 2020, I went from having almost no knowledge about cystic fibrosis to the shocking revelation that I've actually been battling CF my entire life. At 53 years old, I'm still a work in progress, but I'm facing this new diagnosis head-on.
Site Search
Since I could remember, my sister shared her CF story to raise awareness, and she inspired me to do the same. Now, with this year's Teen Advocacy Day, we finally get to advocate together.
I was heartbroken when I learned my baby would be born with cystic fibrosis. However, my son's CF care team changed my perspective and connected me with other mothers of children with CF who became lifelines of support for me.
Understanding that I suffered trauma from medical encounters during my childhood helped make me a more effective self-advocate as an adult.
Although I had heard of cystic fibrosis, I never knew anything about the disease until a chance meeting with a member of the CF community during a networking event. Since then, I have provided donations to CF events and am in awe of the determination and attitude that people with CF have about life.
I always say that when life gives you lemons … turn around and write some Japanese-style poetry. I hope you enjoy these haikus I have written about life with cystic fibrosis.
We've only lived with our daughter Louisa's CF diagnosis for six months. Besides adjusting to her treatments and care needs, our priority has also been to talk openly about this new normal with Louisa's older brother -- in ways a 3-year-old can understand.
Dance has always been my passion, and it led me to audition for my dream reality show, “So You Think You Can Dance.” Although I never thought anything could top my experience on the show, Trikafta® has exceeded my expectations, and I am feeling better than ever.
While you are grinding through a seemingly never-ending cycle of cystic fibrosis treatments, it also can be helpful to engage in self-care activities that bring you happiness. This nurturing routine can help you keep perspective and remind you of why you are undergoing all these treatments in the first place.
Even though I've been vaccinated against COVID-19, I've been using a risk assessment tool to try to make sure that I'm still being as safe as possible.