I have faced the continuous need to self-advocate to manage my life with cystic fibrosis, particularly when facing complications post-transplant.
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Proposed policies would impose significant barriers and add burden for people with CF
More than 60 teens from across the country — almost half of whom live with cystic fibrosis — advocated for support of the PASTEUR Act.
Melanie Lawrence, an adult with cystic fibrosis, was selected to testify before a Senate Health, Education, Labor and Pensions subcommittee regarding the impact of antimicrobial resistance on patients who face heightened risk of infections, like those with CF.
I have enjoyed pretty good health, so I have tried to keep my cystic fibrosis on the back burner while I pursue my passions. Sometimes, though, CF intrudes, reminding me that it’s still here.
My son, Keith, was diagnosed with pancreatic cancer after an initial focus on CF as the cause of his health issues. With people with CF living longer, we need more awareness of pancreatic cancer in CF individuals due to the potential increased risk.
Advocacy is impactful at all ages, but the term can sound intimidating. It implies effort, time, commitment, politics, and publicity. As a 30-year-old with cystic fibrosis, I am currently an active member of the CF community, but I was not always aware of the benefits, power, and impact of advocacy.
The antibiotics used to treat nontuberculous mycobacteria made me choose between the risk of hearing loss versus the reward of better lung health.
Sharing your CF story is one of the most powerful things you can do, but that can be hard for some of us. If you want to use your voice but struggle with how to get started, here are three things that helped me.