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.
People like me are living longer — median survival for someone with cystic fibrosis is now 56 thanks to research and care. But as I grow older, my health is getting more complicated and I'll need my care to keep up.
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In January, I underwent successful phage therapy -- an experimental treatment in which viruses are used to kill difficult-to-treat bacteria. To get a better sense of the future of this potential treatment option for other people with CF, I chatted with the head of the Infection Research Initiative at the Cystic Fibrosis Foundation.
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Everyone with cystic fibrosis faces the fear that their next infection could be the one that doesn't respond to treatments. Chronic infections eventually led to my sister's death. After seeing what she went through, it became clear to me that we have an immediate need for better anti-infectives.
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The top priority in clinical research is protecting the safety of people who participate. Learn more about the numerous layers of review that help keep participants safe.
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For the first time, the Cystic Fibrosis Foundation invited non-CF experts to its annual research conference to meet with CF researchers. The conference -- New Technologies Advancing Toward a One-Time Cure -- in Savannah last month focused on the challenges being faced in gene editing, gene delivery and stem-cell biology and laid the foundation for new collaborations.
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When my 8-year-old daughter with CF found out that the disease is potentially fatal, I was grateful for her optimistic views on life and death. But deep down, I was saddened with the thought of a cure being so far away that I wouldn't be around to see it. Today, my fears have dwindled.
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Dr. Jennifer Taylor-Cousar shares new developments in drugs that fight infections in the lungs of people with cystic fibrosis.