Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.
If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.
Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.
People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.
People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.
Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.
We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.
The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.
As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.
Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Many people living with cystic fibrosis and their families face complicated issues related to getting the care they need. Cystic Fibrosis Foundation Compass makes sure that no one has to do it alone.
CF Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.
CF care team members are paramount in providing highly specialized care to people living with CF. CF Foundation Compass can help by serving as a strategic ally for care teams, so team members can focus on their patients’ care.
CF Foundation Compass can help you navigate insurance, financial, legal, and other issues you are facing. Use this online form to start your conversation with a Compass case manager today.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.
Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.
Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.
It took me 38 years to find a fitness program to stick to. And since I started TrikaftaTM, I am even running for the first time in my life -- and almost enjoying it!
April 6, 2020
Facing the Monster: My COVID-19 Experience
Living Separate. Together.
I have been a relatively “healthy” person with CF and have been active for most of my life. Over the years, I have walked for exercise, hiked, swam, done hot yoga, Zumba, and Body Pump, all with varying degrees of engagement and consistency. But I never stuck with any of these for very long. In November 2017, I felt like I needed to take as much control of my health as I could. I was 38 years old, and my health was getting more difficult to maintain. I knew that my once excellent lung function had declined, and I was really out of shape. I felt disconnected from my body and was terrified that I wouldn't be able to get myself back to a place where I felt good and where my lung function wouldn't have begun the inevitable decline.
I was at a crossroads; it was time to either take the reins or hand it over to a disease I had so far been able to tame.
So, when a new Orangetheory Fitness studio opened near my house, I decided to bite the bullet and try it. Orangetheory is a five-zone, heart-rate-based training program where participants move among a treadmill, rower, and weight floor, completing a HIIT-style (high-intensity interval training) workout. The combination and variety of exercises changes with each day's workout. The goal is to spend 12 or more minutes in the orange zone (84% to 91% of a person's individual maximum heart rate).
I scheduled the introductory class and am frankly still shocked that I didn't back out. Despite my misgivings and fear of not being able to complete the workout, I sucked it up and went anyway. My first class was hard. I power walked and felt like my heart was going to pump out of my chest and like my lungs might burst at any second. I don't know that I actually followed the coach's directions and was just trying to figure out how to make it through without passing out. But I didn't pass out. I survived through the treadmill portion, then the weights and rower, and I was still in one piece. And I felt good, even though I was exhausted. Before I could overthink it, I signed up for an unlimited membership as soon as the class ended. The rest, as they say, is history.
I began as a power walker and told the coach that no matter what, I would never be a runner. Even when I was younger and in the best shape of my life, running was hard for me and had always been something I hated with a passion. Each workout was challenging, but because no two were the same, the usual boredom I felt when doing another kind of exercise never came. And because I could set my own speeds and work to my ability, I didn't feel inferior to classmates or that I couldn't keep up. Slowly, I got fitter. I spent less time in the red zone (92% or higher of my maximum heart rate) and started making headway. I set attainable goals and started increasing my speeds and weights and tried to improve my time.
One day, imbued with the confidence that the orange-lit room and the amazing coaches inspire, I decided to try to jog for portions of the treadmill block. It wasn't pretty and I wasn't going to break any records, but I was doing it. I started running more, steadily increasing my paces and the length of time I could run without needing to walk to catch my breath. I think because running was what I always found most difficult, being able to do it -- even for short periods of time -- gave me a sense of accomplishment I hadn't felt before. I ran more and more and walked less, eventually becoming a full time “slogger” (slow jogger) and very occasional speed demon (if only in my own mind). I ran the fastest mile of my life, completed what they call a “dri-triathlon” and ran without stopping for entire blocks of time. I felt great about myself and what my body could still do, advanced CF age and all. And beyond that, I found a core group of workout buddies who were supportive, motivating, and made coming to the studio fun.
But after two years and more than 450 classes, I had peaked. The limitations of my CF lungs meant I couldn't run any faster or farther, despite my best efforts. It was hard to process, and I felt like a jerk for even being frustrated about it. I know that I am one of the lucky ones and that my experience is not like most people's -- the fact that I was even doing Orangetheory at 40 was a huge victory. But still, it was hard to accept that I couldn't continue getting better.
Then TrikaftaTM happened.
When I first heard about it, I was half-kidding myself that I hoped it would make me run faster. While the promise of a longer and healthier life was paramount, the idea that this medicine might help my speed and endurance lingered in the back of my mind. What if it really was the game-changer it was promised to be? During my time at Orangetheory, there had never been anything effortless about my workouts. Some days were less challenging than others, but I never sailed through a workout, especially when it came to the treadmill. I ran, but with great effort and exertion.
But after a couple of days of taking Trikafta, something changed. I don't know how else to describe it than to say it was like I just had another gear that wasn't there before.
I set the treadmill to speeds that I wouldn't have considered and somehow maintained them. It wasn't the effortless running I had always dreamed of, but my lungs had more to give than they ever did at any time in my adult life. And for the first time ever, running became -- and I still can't believe I'm saying this -- (somewhat) fun! (Most of the time, anyway. There are still days where I seriously question why in the world I am on that treadmill.)
I never could have imagined that -- as a person with CF over the age of 40 -- I would be working out HARD five or six days a week and running nine-minute miles, or that an exercise program -- and the community I became a part of -- would transform both my physical and mental health. I also never thought that I would become inspired to take my newfound and hard-earned stamina and sign up to do the 10-mile Broad Street Run in Philadelphia this year. But I am.
I don't know exactly what made Orangetheory click for me: maybe it's the goal setting and the variation? Or, maybe I just found it at a time in my life where I needed routine and to challenge myself just to prove I still could? But, regardless of the reason, I couldn't be more grateful to Orangetheory for making me believe in myself and showing me that I can do more than I ever thought possible. Also, a big shout out to Trikafta for making it all that much more fun.
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Adult with CF
Shannon is a 40-year-old woman with CF. She holds a master’s degree in elementary education and works at the Tatnall School in Wilmington, Del., as the administrative coordinator and volunteers as the school’s Girls on the Run coach. She is fortunate to have the loving support of an amazing family, great friends, and the communities at her school and her Orangetheory studio. She is very grateful to have found a community of people and an exercise program that make her feel amazing, physically and mentally. Shannon has held fundraisers for the CF Foundation at Orangetheory for the past two years and will be raising money in 2020 by completing the Broad Street Run in Philadelphia. You can find Shannon on Instagram @shancyurtis.
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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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