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)
![Rebecca smiling at the hospital with her care team.](/sites/default/files/styles/image_card/public/2023-02/Rebecca-Donoho-Featured.png?h=de17517d&itok=7kNQuTny)
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My transition from pediatric to adult care filled me with anxiety and proved to be much more difficult than how the experience was described to me. But, when care centers work together with their patients and listen to their concerns, we can improve cystic fibrosis care and address concerns much sooner.
![Rebecca Donoho](/sites/default/files/styles/author_thumbnail/public/2023-02/Rebecca-Donoho-Headshot.png?itok=cGk4SCCa)
![Maura-Wozniak-Hospital-Featured-Rectangle](/sites/default/files/styles/image_card/public/2021-09/Maura-Wozniak-Hospital-Featured-Rectangle.jpg?itok=36b6IWVe)
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Even though it was scary, I made attending medical appointments during the pandemic a priority.
![Maura-Corcoran-Wozniak-Headshot](/sites/default/files/styles/author_thumbnail/public/2021-09/Maura-Corcoran-Wozniak-Headshot.jpg?itok=bV5JXJIO)
![Michelle-Herpolsheimer-Waiting-Room-Featured-Rectangle](/sites/default/files/styles/image_card/public/2021-09/Michelle-Herpolsheimer-Waiting-Room-Featured-Rectangle.jpg?itok=2yGQgogW)
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After several months of telehealth visits with my care team, I returned to the clinic for an in-person visit. Because of COVID-19, some aspects of the visit were different than before.
![Michelle-Herpolsheimer-Headshot](/sites/default/files/styles/author_thumbnail/public/2021-09/Michelle-Herpolsheimer-Headshot.jpg?itok=er9ncbrI)
![Jacqui-Sjoberg-Selfie-Featured-Rectangle](/sites/default/files/styles/image_card/public/2021-09/Jacqui-Sjoberg-Selfie-Featured-Rectangle.jpg?itok=ImHrpKvQ)
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As a military spouse who makes frequent moves, I have had to transition to new cystic fibrosis care centers 11 times in 21 years. Here are three things I have learned to make each changeover work.
![Jacqui-Sjoberg-Headshot-Updated](/sites/default/files/styles/author_thumbnail/public/2021-09/Jacqui-Sjoberg-Headshot-Updated.jpg?itok=AHOGP3TD)
![Lydia-Sand-Telehealth-Featured-Rectangle](/sites/default/files/styles/image_card/public/2021-09/Lydia-Sand-Telehealth-Featured-Rectangle.jpg?itok=DMIF4cUu)
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COVID-19 has introduced telehealth appointments to my cystic fibrosis care. I've learned that advocating for myself is even more important when my care team and I can't be in the same room.
![Lydia-Sand-Headshot](/sites/default/files/styles/author_thumbnail/public/2021-09/Lydia-Sand-Headshot.jpg?itok=X-mfXZ3c)
![Creating-a-Smooth-Transition-to-Transplant-Clinic-Featured-Image-rectangle](/sites/default/files/styles/image_card/public/2021-09/Creating-a-Smooth-Transition-to-Transplant-Clinic-Featured-Image-rectangle.jpg?itok=5RPPuQjV)
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Since starting the transplant journey, I have learned many things, run into many roadblocks, and been left shocked by other issues.
![Paul-Merritt-Headshot](/sites/default/files/styles/author_thumbnail/public/2021-09/Paul-Merritt-Headshot.jpg?itok=Lk29DGor)