Today, there are close to 40,000 people in the United States with CF due in large part to more people living longer into adulthood, signaling a shift in what it means to live with CF in the modern era.
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I was diagnosed with stage IV colon cancer. After one year, I’m still fighting a tiring battle with it and cystic fibrosis, but I won’t quit.
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.
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.
NextBreath is a free, biannual virtual event that provides support and connection for people with CF, family members, and caregivers who are living with advanced disease or navigating the stages of the lung transplant process.
Having cystic fibrosis means that hospitalizations are nothing new to me. But as I get older, I am much more aware of all the events I'm missing out on — birthdays, concerts, and school field trips. So this fall, I decided to take my life back from cystic fibrosis.
The Foundation, in collaboration with external community advisors, finalizes recommendations in area of Community to help foster more inclusion and improve the experiences of Black people living with and impacted by cystic fibrosis.
Adjusting to life after my newly adopted son’s cystic fibrosis diagnosis has been challenging at times, but I will do all I can to support and advocate for him.