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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.

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Josh giving a thumbs up at the finish line of a marathon, wearing a medal around his neck.


How Hard Truths From My Care Team Helped Me Qualify for the Boston Marathon

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
| 6 min read
Keith Connolly laying on a couch turned away from the camera


As People With CF Live Longer, Their Needs Are Changing

My son, Keith, was diagnosed with pancreatic cancer after an initial focus on CF as the cause of his health issues. With people with CF living longer, we need more awareness of pancreatic cancer in CF individuals due to the potential increased risk.

A headshot of Teresa Connolly
| 4 min read
A member of Kinley's care team wearing PPE and showing a toy to Kinley, who is sitting in a clinic room.


True Teamwork in CF Care

Since my daughter, Kinley’s, cystic fibrosis diagnosis, I have come to rely on her care team. We have become a true team in Kinley’s care.

A headshot of Krista Kuska
| 5 min read
A portrait of Lauren with her husband and three children cuddling in bed.


The Importance of Self-Advocating After Transplant

My daughter, Lauren, didn’t know that having a lung transplant would greatly increase her risk for cancer until it was too late. Her death has taught me how important it is to know the health risks faced after transplant and our need to advocate for ourselves.

A professional headshot of Gerry Sweeney
| 6 min read
Laura Steuer smiling wearing a grey turtleneck standing in front of a blue and white painted wall.


How a Small Regional Hospital Helped Me Realize the Value of CF Care

I didn’t realize how important my cystic fibrosis care team was — or how they had my back — until I stayed in a hospital where the staff had little knowledge of the needs of people with cystic fibrosis.

Laura Steuer
| 5 min read
Whitney with her husband, Alex and son, Joseph.


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


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.

| 5 min read


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.

| 5 min read


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.

| 5 min read


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.

| 12 min read


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.

| 7 min read


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.

| 3 min read