I was pleased to see that the third plenary session at the North American Cystic Fibrosis Conference included patient stories that reflected the diverse experiences of those with cystic fibrosis. I also like that it focused on the need for bold action to help those who can't benefit from modulators and centered on the full ecology of treatment innovations that can benefit every person with CF.
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When I scroll through my social media accounts, it’s hard not to compare myself to other people and feel like I could have accomplished so much more had it not been for my cystic fibrosis. Instead of getting depressed, I now rely on therapy, positive affirmations, and being kind to myself to preserve my mental health
I’ve been a runner for most of my life. After having to drop out of three previous marathons because of my CF, I was finally ready to run this year’s Boston Marathon.
Being a parent to a child with cystic fibrosis is hard. You need to hear from someone else in your shoes that it’s OK to grieve for the life you thought you were going to have with your child.
As a community, we are very good at masking and keeping a safe distance to reduce risk from germs. And just like we have highly effective therapies to treat CF, we now have highly effective vaccines to protect our kids from COVID-19.
Coping with cystic fibrosis as a child led to depression. Creativity -- especially singing -- helped me find myself and led to my auditioning for The Voice Australia.
For me, exercise has been a magical treatment for my cystic fibrosis. I have found that our bodies respond to the demands put on them, so train your body to meet a fitness goal, and your strength and endurance will improve.
Growing up with cystic fibrosis was often lonely, but discovering how to make myself and others laugh helped me navigate those years and gave me a purpose in life.
At 34, I had no obvious symptoms or family history of colon cancer. My body was telling me something was wrong and compelled me to push for more tests to reach a diagnosis. Now every day I get up and learn to be comfortable living in the uncomfortable. With more screenings happening earlier, you may never have to.
We’re highlighting six creators who are helping raise awareness of cystic fibrosis. By sharing parts of their life with CF on paper or on screen, they’re voicing the variety of ways that people experience the disease.