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.
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.
Fitting school, work, and CF treatments into my daily routine is tough, and when I push myself too far, my performance and health suffer. I’m determined, however, to keep going and find a balance that is right for me.
Spending so much of my childhood in and out of the hospital and doing CF treatments was already enough to deal with, so it felt easier to keep my mental health challenges hidden. However, speaking up about my feelings helped me learn that caring for my mental health is as important as taking care of my physical health.
Living with CF means I quickly became familiar with the patient side of the health care field. My experiences in the hospital have motivated me to become the kind of nurse that listens to and advocates for their patients.