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.
For those of us who can’t take modulators, it can sometimes feel like you’ve been left behind. But I have found hope and motivation by participating in clinical trials.
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The CF community supported me so much during my two double-lung transplants, so I’m eager and excited to give back. One of the ways I got involved was by becoming a mentor, which is how I formed an incredible bond with my friend, Brittani.
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Living with CF means I quickly became familiar with the patient side of the health care field. My experiences in the hospital have motivated me to become the kind of nurse that listens to and advocates for their patients.
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Take it from me, dating with cystic fibrosis can be hard — from not having the energy to keep up with our partners to dealing with all the not-so-sexy aspects of the disease. But it’s important to not settle for anything less than the love and support we deserve.
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For those of us who can’t take modulators, it can sometimes feel like you’ve been left behind. But I have found hope and motivation by participating in clinical trials.
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The physical and emotional toll of CF can sometimes make me feel isolated from my peers. But I’ve learned being vulnerable about my struggles can create stronger relationships that make me feel supported and loved.
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To the moms of children with CF who feel isolated in their journey — you are not alone. This is my letter to you, from someone who understands.
