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.
![Zanny flexing her bicep which has a PICC line in it](/sites/default/files/styles/image_card/public/2024-04/Zanny-Steffgen-Featured-Image.png?h=8abcec71&itok=Fr7k5PvA)
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.
![A professional headshot of Zanny Steffgen](/sites/default/files/styles/author_thumbnail/public/2024-04/Zanny-Steffgen-Headshot.png?itok=oD3iLvkp)
![Zanny flexing her bicep which has a PICC line in it](/sites/default/files/styles/image_card/public/2024-04/Zanny-Steffgen-Featured-Image.png?h=8abcec71&itok=Fr7k5PvA)
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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.
![A professional headshot of Zanny Steffgen](/sites/default/files/styles/author_thumbnail/public/2024-04/Zanny-Steffgen-Headshot.png?itok=oD3iLvkp)
![Natalie using a nebulizer and vest in a hospital bed](/sites/default/files/styles/image_card/public/2023-11/Natalie-Keas-Featured-Image.png?h=8abcec71&itok=zRNLUyXs)
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It took a lot of self-advocacy — and a lot of medical testing — before I received a diagnosis of CFTR-related disorder. Fortunately, my parents supported me as I went from specialist to specialist and finally got my diagnosis.
![A headshot of Natalie Keas](/sites/default/files/styles/author_thumbnail/public/2023-11/Natalie-Keas-Headshot.png?itok=y8be5B-h)
![Abigail Gordon sitting in a wheelchair and showing off her pumpkin ostomy pouch cover.](/sites/default/files/styles/image_card/public/2023-10/Abigail-Gordon-Featured-Image.png?h=b6cb1cc9&itok=pz01Jq17)
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My path to a total colectomy was long and challenging. Now I want to share what I learned about self-advocating for necessary medical care and coping with a surgically created opening on my abdomen called a stoma.
![Abigail sitting outside and smiling with her dog](/sites/default/files/styles/author_thumbnail/public/2023-10/Abigail-Gordon-Headshot.png?itok=cNW6BsWt)
![Christa Lux smiling and grabbing her hat in front of the Grand Canyon](/sites/default/files/styles/image_card/public/2023-07/Christa-Lux-Featured-Image.png?h=90178717&itok=z5Fr3QZ7)
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Advances in cystic fibrosis care have been life-changing for me, and I’m grateful to breathe easier with a CFTR modulator. However, I began to experience new issues in the past few years, and I am left wondering if it’s a side effect of the CFTR modulator or something else.
![A selfie of Christa Lux](/sites/default/files/styles/author_thumbnail/public/2023-07/Christa-Lux-Headshot.png?itok=j2ShERe7)
![Lin Marando taking a selfie in a hospital mirror with a friend](/sites/default/files/styles/image_card/public/2023-06/Lin-Marando-Featured-Image.png?h=8abcec71&itok=cCndgaox)
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I have faced numerous health challenges in my life, including a recent diagnosis of osteopenia. Despite this, I am resilient, grateful, and determined to take care of myself while finding strength in the cystic fibrosis community.
![A selfie of Lin Marando showing off her tattoos and forked tongue](/sites/default/files/styles/author_thumbnail/public/2023-06/Lin-Marando-Headshot.png?itok=4Sv8snRy)
![Samantha looking out into the distance outside wearing a hearing aid.](/sites/default/files/styles/image_card/public/2023-03/Samantha-Marino-Featured.png?h=de17517d&itok=67f_no0n)
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The antibiotics used to treat nontuberculous mycobacteria made me choose between the risk of hearing loss versus the reward of better lung health.
![Samantha Marino headshot](/sites/default/files/styles/author_thumbnail/public/2022-02/Samantha-Marino-Headshot.jpg?itok=zOgvPtg5)