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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
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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.

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Stacy Allen
| 5 min read
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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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Sydney Sabol
| 5 min read
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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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Jacqui Sjoberg
| 5 min read
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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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Patrick Flume, MD
| 12 min read
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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.

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Meagan Helmick
| 7 min read
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How Patient Surveys Made Our Care Team More Sensitive to a Single Voice

The Patient and Family Experience of Care Survey helps cystic fibrosis care teams start formal quality improvement projects, but it also has helped my team become more sensitive to the voices of our patients.

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Allison Moreau, BS, RRT
| 3 min read