The Future Is Now: The Changing Needs of People With CF

The third plenary at this year’s North American Cystic Fibrosis Conference focused on the changing needs of the CF population that are compelling an evolution in CF care. As a person with CF, this evolution in care directly affects me as I face the challenges of living longer with this disease. 

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Meagan-Tenyer-Headshot
Meagan Tenyer
Meagan Tenyer sitting outside her RV.

I’m an adult with cystic fibrosis who is very involved in my own care. So, I was excited to watch the third plenary session at this year’s North American Cystic Fibrosis Conference (NACFC), “Evolving with the Times: Staying Agile With a Diverse and Aging CF Patient Population.” 

During the plenary, Elizabeth Tullis, MD, discussed the implications to CF care brought on by better health as more of us are living longer, earning degrees, starting careers, having families, and learning new ways to manage our health while remaining active. Thanks to improvements in treatments as part of CF care, there are almost 40,000 of us now

As an animation of projected improvements in lung function and increases in life expectancy showed, this trend will likely continue. With it, more of us will develop CF-related complications that require coordinating our care with different specialists than we see now. 

Dr. Tullis noted that our CF care teams will need to adapt to meet our changing needs. She explored possibilities for CF care in the future and provided examples of changes that are occurring now. Care teams are responding to our changing circumstances by providing career and financial information to help us plan for a future we didn’t anticipate and recommending long-term healthy eating habits instead of the traditional high-fat diet to people on modulators who can suddenly gain weight with little effort.

This was encouraging to learn, and I’m happy for the progress the CF population has made. But populations are made up of individuals, illustrated by a video featuring Becky Skinner, an adult with CF. Becky’s story is similar to the stories of many people with CF — including mine. Our current health leaves us focused on the present and the care we need now. I benefit from CFTR modulators — first Orkambi and now Trikafta® — and my husband, Justin, and I are grateful that they have stabilized my health to delay transplant. But, like Becky, my health hasn’t been transformed by these modulators. I still need my familiar multidisciplinary CF care team, but I also need them to work with additional specialists to help me stay on top of my health in what now promises to be a long future ahead of me.

You can get the full story by watching Dr. Tullis present her plenary session below.

 

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Topics
Aging with CF | North American CF Conference
Meagan-Tenyer-Headshot

Meagan was diagnosed with cystic fibrosis at 8 years old. She has been volunteering and fundraising for the Cystic Fibrosis Foundation's Great Strides event since the early 2000s, as well as for CF Cycle for Life since 2015. She spends her days working in patient education at her local hospital, and is heavily involved in her care center's CF patient advisory group. Her hobbies include traveling, photography, the beach, and spending time with her family and husband, Justin.

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