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.
Dr. Jennifer Taylor-Cousar is passionate about bringing attention to health inequities in cystic fibrosis. By partnering with the CF Foundation, other organizations, and the CF community, she believes we can work together to create equitable health outcomes for everyone with CF.
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Teaching My Kids Hard Truths About CF
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I depend on the medical expertise of my cystic fibrosis care team to keep my child healthy. I depend on the complementary expertise of other moms of kids with CF to help me stay emotionally healthy.
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When my daughter was diagnosed with cystic fibrosis as a newborn, I was shattered. But then, I decided I would raise her to know that CF was something she had, not who she was.
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Having enjoyed good health most of my life, I gave little thought to cross-infection risk -- even though others in my family have cystic fibrosis. The birth of my son has me rethinking that.
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After my son was diagnosed with cystic fibrosis, I knew that I wanted to connect with other CF families. Fortunately, I've been able to find a group of moms who understand what my life is like and help me cope.
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Having lived with cystic fibrosis for 47 years, I want to pay it forward and share the life lessons I've learned with new parents of children with CF.