I was not emotionally prepared the first time I saw my daughter in her vest. But now, I am thankful to have this device as a part of our daily routine to keep her lungs healthy.
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The cystic fibrosis care model is evolving to support people living longer with CF and their increasingly diverse health needs. Catalyzed by the approval of Trikafta® and the COVID-19 pandemic, this adaptive and personalized care model encompasses novel ways to connect clinicians and patients.
I asked the Cystic Fibrosis Foundation’s Dr. Whitney Brown about how cystic fibrosis care might change as the CF population grows, lives longer.
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.
After I had to go on disability to focus on taking care of my health, I got involved with the CF community and volunteered with Community Voice. Little did I know it would help me when I needed it most.
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.
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.
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.