At times, my pediatric CF care team told me about the possible negative outcomes of my cystic fibrosis. Their gentle support helped prepare me for unexpected good health, and is one reason why I was able to qualify for the Boston Marathon.
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I began volunteering as a way to support my cousin with CF. But over time, I discovered the community and impact that can come from even the smallest efforts.
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.
My daughter, Lauren, didn’t know that having a lung transplant would greatly increase her risk for cancer until it was too late. Her death has taught me how important it is to know the health risks faced after transplant and our need to advocate for ourselves.
Since my daughter, Kinley’s, cystic fibrosis diagnosis, I have come to rely on her care team. We have become a true team in Kinley’s care.
We’re highlighting three creators who are helping raise cystic fibrosis awareness. They’re voicing the variety of ways that people experience the disease by sharing a part of their life through their works.
Driven by a career in community health and a late cystic fibrosis diagnosis, I discovered my purpose through volunteering with the CF Foundation. Inspired by the power of connecting with my peers, I went on to develop my own program designed to support other adults in the CF community.
Working as part of a cystic fibrosis care team gives me the opportunity to provide the type of personal care I’m passionate about — I just hope my patients understand how much we are invested in their well-being.
I have always been very interested in science, eventually leading to my career as a genomic scientist. My curiosity helped me cope with the uncertainties of cystic fibrosis, leading me to many academic, professional, and personal opportunities that gave me a more expansive view of how my different roles and identities can build upon one another.