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.
Having an atypical presentation of CF means I stand somewhere between the CF world and the rest of the world — and that makes me feel like I belong in neither.
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After finally feeling like I had the right medications to manage my anxiety and depression, I started Trikafta®, and everything changed. Struck with fatigue, all I wanted to do was stay in bed.
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I learned early on that I would never live a “normal” life. As I have struggled with feelings of isolation, I'm even more grateful for the supportive people in my life.
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The Patient and Family Experience of Care Survey helps cystic fibrosis care teams start formal quality improvement projects, but it also has helped my team become more sensitive to the voices of our patients.
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After years of being in a deep depression, one little revelation from my therapist made all the difference in how I faced the traumas in my life.
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A lot of people with cystic fibrosis are turned off by the thought of counseling. Finding the right counselor can make all the difference.
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As an adult with cystic fibrosis, I am used to being the patient and having someone take care of me. However, the roles were reversed when my then-fiancé needed surgery. Striking a balance between taking care of him and myself was difficult but necessary.
