My voice plays an important role in managing my cystic fibrosis. Breathing techniques that I have learned as a singer help me perform pulmonary function tests and my voice can signal a change in my health — if I listen to it.
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I have faced the continuous need to self-advocate to manage my life with cystic fibrosis, particularly when facing complications post-transplant.
Not only am I a member of the CF community, but I’m also a member of the clinical community — an oncology nurse — and I have had to endure hard lessons to learn to advocate for myself and get the medical care I need.
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.
Life with cystic fibrosis can come with many recovery days. But it’s hard for me to avoid feeling guilty when I need time to rest and recharge. Working harder to be more productive and make up for the time I lost at work and with family while resting often leads me right back to my couch and needing to take another day to rest.
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.
From scheduling appointments to dealing with insurance, taking charge of your own care is a part of becoming an adult with cystic fibrosis. However, when the time came for me to take over these responsibilities, I realized more could be done to make the transition smoother.
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.