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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Taking a step back and taking a break from social media helped me to realize that it's okay to have a definition of health and wellness that looks completely different from anyone else.
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After I was diagnosed with cystic fibrosis at the age of 21, I was eventually able to find a way to involve myself in the CF community by doing something I loved -- golfing. Along the way, I met some incredible people who showed me the importance of chasing the moment.
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Friendships are an important aspect of life, but they are especially meaningful when you have a disease like cystic fibrosis. By finding a group of people who take the time to understand what I'm going through, I've been able to maintain a strong support system through the ups and downs of life with CF.
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I am thankful for the relationships I have online with other people with cystic fibrosis. But the flip side of using social media is that I open myself up to the possibility of unkind words or feelings of sadness whenever I log in.
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Hindsight is 20-20, so I wrote a note to my younger self to explain all the things I wish I had known when I was teenager coming to terms with my cystic fibrosis.
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Although I asked for help to manage the physical aspects of my disease, it took a long time for me to feel comfortable asking for support for the emotional impact of cystic fibrosis.