I never had the luxury of time to reflect on the hardships that I experienced fighting cystic fibrosis because I was too focused on that particular day’s struggle. Still, there are two experiences that have stuck with me even though they were more than 10 years ago.
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After gaining weight on IV steroids to treat my cystic fibrosis, my self-image became distorted, and I developed anorexia. I realize that I am not my illnesses, but they are a part of my life that I can’t hide anymore.
Although I had been told that my coughing would stop, I wish I had known more about the transformative change that Trikafta® would have on my life. It has almost made me wistful for the time when I was sick, back when I was more in tune with what my body was experiencing.
Even though Trikafta saved my life, I am still dealing with the emotional trauma of being so close to death and missing the person I was before I got so sick.
I am excited that the Cystic Fibrosis Foundation has surpassed $100 million in research funding through its Infection Research Initiative and that it promises to continue to support infection research at the same rate as the past three years. I am hopeful that the patient community will hear more about funding updates for new infection research as we move forward.
Growing up, I struggled with wanting to feel “normal” because I was bullied and judged by my peers for my cystic fibrosis. But then I found genuine friendship in college and learned what it means to feel truly supported.
As a personal trainer, I used to feel insecure about the physical effects of CF on my body. But over time, I’ve learned that my strength is defined by so much more than my appearance.
I suffered a great deal of damage growing up with cystic fibrosis in a small Appalachian town — physically and emotionally. But with a lot of hard work, I have been able to overcome some of the emotional scars.
Cystic fibrosis defined my identity for many years until I participated in clinical trials for Trikafta®. As my health improved, I struggled to figure out what this meant for my sense of self. This experience motivated me to help other young adults with CF navigate the many changes that modulators can bring.
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.