We asked -- and hundreds of you answered -- how you pass the time during long treatments. Check out what the CF community told us when we asked what makes you #morethanCF.
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It can be difficult to find time for daily CF treatments in your already jam-packed lives, but your respiratory therapist can help.
Our daughter's airway clearance treatment with the vest went more smoothly after we learned a few tricks.
I struggled emotionally after learning that after negative carrier and newborn screens, my son had cystic fibrosis. I’m now advocating for people with rare mutations.
My son, who is Black, has cystic fibrosis. It seems like just a normal fact of life, but I have become frustrated with having to convince doctors that he really does have CF. I hope that one day people of color won’t have to have the same experience.
Cystic fibrosis affects people of every racial and ethnic group. Of the nearly 40,000 people living with CF in the U.S., approximately 15% are identified as racially or ethnically diverse. Research shows that people of color with CF, particularly people who are Black and Hispanic, experience unique challenges and often have negative experiences that can lead to poorer outcomes. Some of these inequities are referenced in the following data.
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.
After years of being treated as an oddity, I want people to acknowledge that I am a Black girl with cystic fibrosis. I want my voice to be heard.
I went through my first surgery recently. I want to share what I learned during my recovery.