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.
Although she has two CF mutations, my daughter does not have cystic fibrosis. She has CFTR-related metabolic syndrome. She’s healthy now, but what about the future?
BLOG
When my four children were young, it was important for my husband and me to protect their sense of security. We did what we could to reduce their fears about my frequent hospital visits and even make it fun for them at times.
BLOG
I've spent many Christmases in the hospital; cystic fibrosis never takes a vacation. But over the years, I found ways to fill my hospital room with holiday cheer.
BLOG
Being hospitalized with COVID-19 was isolating, even my daughter was not allowed to visit. But, thanks to the women and men who provided my care, I was never alone.
BLOG
I wrote this poem to my daughter as I watched over her in the hospital.
BLOG
I went the first 17 years of my life without being hospitalized, but CF caught up to me when I had my first “tune up” last year. As much as I thought I knew about what it would be like, I wasn't prepared for how that first hospitalization would feel.
BLOG
As someone who is in the hospital three to four times a year, I've found that there are a few things I need to create a comfortable environment. I love to look online and see what other people with CF bring to the hospital, so hopefully, my list will give you a few ideas for your next stay.
