I felt so alone as a kid being gay and having CF — there weren’t any role models in the 80s and 90s that I could look up to. Eventually, I found people who understood what I was going through and that helped me feel good about who I was, and who I am today.
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After opening up a time capsule that I put together when I was 7 years old, I decided to write my childhood self a letter, explaining how great her life is when she is 30.
I have answered questions from many about what cystic fibrosis is, but the question that I really wanted to address was: why do I believe I have CF?
I stopped exercising regularly after losing my mother (and workout partner) to cancer. Once I started doing virtual fitness classes during the pandemic, I began to feel stronger and healthier, both mentally and physically.
Although I'm glad that my two children with cystic fibrosis will soon have the opportunity to try Trikafta, I am also a little worried about whether they will have side effects and how well they will do on the drug long-term.
Understanding that I suffered trauma from medical encounters during my childhood helped make me a more effective self-advocate as an adult.
After finally feeling like I had the right medications to manage my anxiety and depression, I started Trikafta®, and everything changed. Struck with fatigue, all I wanted to do was stay in bed.
As a person with cystic fibrosis, I used alcohol and drugs to fit in with my peers and cope with the hardships of having a chronic disease. I still struggle with sobriety, but I have taken control of my health and my life.
My feisty, athletic nature has gotten me through two double-lung transplants. Although my active lifestyle is different than before, I have embraced brand-new competitive pursuits that have helped me develop the mental fortitude to overcome medical adversity.
Since the loss of my sister to cystic fibrosis, grief has hit me in waves. Sometimes it feels as though I can't breathe. Despite this, I have been able to function and keep going. That is what Claire would have wanted me to do.