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)
![Shandra and her daughter holding hands and wearing black gowns outside](/sites/default/files/styles/image_card/public/2023-08/Shandra-Arceneaux-Featured-Image.png?h=8abcec71&itok=YY3ku1Z8)
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I was determined to finish school and set a good example for my children. Along the way, I learned how important it is to have a strong support system to help manage the challenges that can come with cystic fibrosis while I pursue my dreams.
![A selfie of Shandra Arceneaux](/sites/default/files/styles/author_thumbnail/public/2023-08/Shandra-Arceneaux-Headshot.png?itok=6KVI44jq)
![Jamie and his daughter, Desi, standing in front of the school bus](/sites/default/files/styles/image_card/public/2023-08/Jamie-Roney-Featured-Image.png?h=8abcec71&itok=ifkdn4xy)
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Preparing for the school year with cystic fibrosis involves careful planning and advocacy. Since my daughter, Desi, started school, I’ve learned about how to best prepare Desi, her teachers, and school administration to help ensure her education and health thrive.
![Jamie-Roney-Headshot](/sites/default/files/styles/author_thumbnail/public/2021-09/Jamie-Roney-Headshot.jpg?itok=DLP_xQ-u)
![Rena Barrow and her families, all wearing red t-shirts that read "Two Salty Okes" at their local Great Strides event](/sites/default/files/styles/image_card/public/2023-08/Rena-Barrow-Featured-Image.png?h=8abcec71&itok=nF5ndVq1)
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My children’s experiences being African American with cystic fibrosis motivated me to speak out and ignite change for families who are Black, Indigenous, and people of color (BIPOC) in the CF community.
![A headshot of Rena Barrow](/sites/default/files/styles/author_thumbnail/public/2023-08/Rena-Barrow-Headshot.png?itok=r9uSDa48)
![Matison smiling in a hospital bed holding a plush toy in the shape of lungs](/sites/default/files/styles/image_card/public/2023-08/Matison-Deaton-Featured-Image.png?h=d8442314&itok=Y3IkfHxp)
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I have faced the continuous need to self-advocate to manage my life with cystic fibrosis, particularly when facing complications post-transplant.
![A headshot of Matison Deaton smiling outside](/sites/default/files/styles/author_thumbnail/public/2023-08/Matison-Deaton-Headshot.png?itok=9dSf_Xo4)
![A photovoice study participant embracing her toddler son.](/sites/default/files/styles/image_card/public/2023-08/Olivia-Stranksy-Feature-Image.png?h=8abcec71&itok=C6qtHzpn)
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Researchers from the University of Pittsburgh wanted to better understand the realities of parenting as a person with cystic fibrosis, so they collected firsthand accounts from members of the CF community.
![A professional headshot of Olivia Stranksy](/sites/default/files/styles/author_thumbnail/public/2023-08/Olivia-Stranksy-Headshot.png?itok=0-f9sHJN)
![Josh giving a thumbs up at the finish line of a marathon, wearing a medal around his neck.](/sites/default/files/styles/image_card/public/2023-08/Josh-Weiss-Featured-Image.png?h=8abcec71&itok=Mf_A0zVq)
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At times, my pediatric CF care team told me about the possible negative outcomes of my cystic fibrosis. Their gentle support helped prepare me for unexpected good health, and is one reason why I was able to qualify for the Boston Marathon.
![A professional headshot of Josh Weiss](/sites/default/files/styles/author_thumbnail/public/2023-08/Josh-Weiss-Headshot.png?itok=_3fFV6Hr)