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CF Community Blog

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.

More community posts
Whitney with her husband, Alex and son, Joseph.

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Building Mutual Trust With My Child’s Care Team

Although the initial diagnosis for cystic fibrosis seemed to elude our doctors, we knew in our hearts that our son had cystic fibrosis. When we advocated for and got a CF doctor, we began a relationship that became a partnership of mutual trust and respect.

Whitney Klepadlo headshot.
| 5 min read
Stacy Allen Evan Doctor Selfie

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Feedback to My Son’s CF Care Team: Together, We Make It Better

As Evan's mom, I have to constantly decide where to invest my time, especially when it comes to providing feedback. So, when offered the chance to turn my survey fatigue into something that would actually make a difference and be less of a hassle to do, I jumped at it.

Stacy-Allen-Headshot
| 5 min read
Sydney-Sabol-Treatment-Featured-Rectangle

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Adding Medical Cannabis to My Care Plan

After careful thought, I decided to add medically prescribed cannabis to my care regimen. After using it for six months, I've noticed an improvement in both my mental and physical health.

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| 5 min read
Jacqui-Sjoberg-Selfie-Featured-Rectangle

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What I’ve Learned From 11 CF Care Centers in 21 Years

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.

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| 5 min read
Savannah-Fuller-Dr-Flume-Featured-Rectangle

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A Doctor’s Perspective on CF Care

Patrick Flume, MD, is a pulmonologist and the director of the adult cystic fibrosis center at the Medical University of South Carolina and part of my care team. For National Doctor's Day, I had the opportunity to sit down with Dr. Flume and ask him some questions about CF, his approach to CF care, and how it's changed during his career.

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| 12 min read
Meagan-Helmick-Trikafta-Weight-Gain-Featured-Rectangle

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What I Learned About My Trikafta Weight Gain

Trikafta® has done wonders for my health but not my waistline. I was relieved to find out, however, that I wasn't alone in my concern about my sudden weight gain and that bringing the topic up to my care team didn't mean that I wasn't grateful for all Trikafta has done for me.

Meagan-Helmick-Headshot
| 7 min read