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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I hadn't realized the extent to which having cystic fibrosis helped shape me as a social worker, until I opened up to my coworkers about my disease. Through those conversations, I have come to understand that isolation causes many people with CF to struggle and that connection to others and a support system are key to coping with this disease.
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My son who has cystic fibrosis required extensive treatment as a toddler, which I believe had a traumatic effect on his mental health. With the help of therapy, I have helped him learn how to self-advocate and use coping strategies for his anxiety, starting when he was just 4 years old.
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It's difficult to manage cystic fibrosis self-care when you have a child with a disability. Don't pressure yourself to be like other moms. Just do the best you can. Your kids will value your efforts.
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I agree with the saying that laughter is the best medicine. I've been taking it for years.
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As a black man with cystic fibrosis, I am in a minority group within a minority group. I waited my whole life to find someone I could easily relate to until I happened upon a Facebook group for post-transplant patients.
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Despite my diagnosis of cystic fibrosis, I show no symptoms and have an above-average FEV₁. I struggle more with survivor's guilt than I do with this disease.