The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.
For those of us who can’t take modulators, it can sometimes feel like you’ve been left behind. But I have found hope and motivation by participating in clinical trials.
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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.
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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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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.
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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.
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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.
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I didn’t realize how important my cystic fibrosis care team was — or how they had my back — until I stayed in a hospital where the staff had little knowledge of the needs of people with cystic fibrosis.