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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Although we may have had nine months to prepare, getting our daughter's cystic fibrosis diagnosis before she was born came with a unique set of challenges.
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Last year -- just one week before my 12th birthday -- my doctor reached out to my family and asked me if I wanted to enroll in a clinical trial. Here's why I decided to say yes.
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In today's world, the statistics of living with a complicated disease like cystic fibrosis would have even the finest mathematicians spinning to calculate its total sum. Sometimes, I wonder how my son Alex manages it all in a life dictated by numbers.
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Kids can be picky eaters. When you have a child with CF and the nutritional stakes are higher, you may need some creativity to keep them interested.
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A mother worries that her son may lose access to crucial cystic fibrosis medication if proposed health care reforms are carried out.
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As a parent of two young adults with cystic fibrosis, Peter knows the financial challenges and obstacles people with the disease face when trying to access quality, affordable care.