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.
I stopped exercising regularly after losing my mother (and workout partner) to cancer. Once I started doing virtual fitness classes during the pandemic, I began to feel stronger and healthier, both mentally and physically.
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For most of my life, I've felt exercise was one of my strengths as a person with cystic fibrosis. In my parents' home, we had a drawer full of more than 50 exercise videos with everything
from 80s Reebok® step aerobics to Pilates. We lived among steep hills, and a brisk walk around the neighborhood cleared my lungs better than most airway clearance techniques. We had two treadmills, an exercise bike, weights, and more. But
I've come to realize that far more important than any piece of exercise equipment was my mom herself -- my perfect exercise partner.
Even though she was 35 years my senior and battling ovarian cancer, my mom was more physically fit than me for almost all my life. She was willing to exercise with me anytime, anywhere, and as much as I was capable of doing. She patiently waited for me
to sit and catch my breath or do manual chest physical therapy to help clear the mucus we had dislodged during our workout. She kept beating the odds as
a cancer survivor, and I kept beating the odds as an adult with CF; and it felt like we'd always just continue that way -- supporting each other and surviving.
Exercise cleared my lungs, improved my mental health, and gave me some (illusion of, perhaps) control over my disease. I coughed my head off, and it was exhausting, but I felt so much better in the hours after a workout. If I skipped even one day of exercise,
I felt so much more congested. And so, my mom and I exercised together nearly seven days a week.
And then on Dec. 30, 2017, after 13 years of stage 3, and then stage 4 ovarian cancer, my mom passed away. I was 35. And overnight, exercise was no longer one of my strengths.
I felt sad and lonely doing our beloved exercise tapes or walking our favorite routes alone. With a ton of personal responsibility -- an ailing dad who went on to pass exactly 400 days after my
mom, a 9-month-old son, my own health concerns, and emotional fatigue -- it just felt like there was usually some more pressing priority than exercise, and I just lacked motivation.
I had spurts of regular exercise in those years but nothing that lasted.
Then, the world was turned upside down by the pandemic. I noticed the Cystic Fibrosis Foundation was collaborating with Beam to provide free access to online exercise classes, so I signed up. I took on-demand classes a few times and noticed a live ballet class taking place on April 8 -- my birthday. I hadn't taken a live ballet or dance class since college, and I was excited.
I asked my husband if, for my birthday, he could watch our 3-year-old, Declan, so that I could participate in the class. Because, yes, taking time out for myself to exercise seemed like a luxury and a gift.
I signed in to the ballet class and was surprised to see that everyone had their cameras on during the class. I shoved Declan's toys out of view, checked my hair, and turned on my camera. It felt like the class was in fact a birthday gift made just for
me: Ballet, an instructor who also had CF, some CF friends I already knew and some I would become close with in the months to follow. I was smiling from ear to ear.
After that initial class, I prioritized attending ballet each week. Then, I attended another dance class that was offered. Despite having to take some time off for a broken foot, by year's end I was attending every live class I could -- even meeting up
with CF friends virtually to take classes on-demand together. Doing that pushed me into other exercise styles, like high-intensity interval training, that I wouldn't have attempted alone.
Just as my mom was the most important component of my prior commitment to exercise, the friends I've made through online fitness classes are the key to my current commitment to exercise. These friends have become my Beam family, and some of my closest
friends, despite being across the U.S., in the U.K., and even Australia.
This “squad” of mine has become the support system I never knew I was missing. Within this squad, there is no judgment. Ever. We are all proud of each other just for showing up to class.
We all understand health struggles, and we've all experienced significant -- though different -- adversity. I don't have to apologize or explain my coughing. I don't have to feel self-conscious for the many health issues I may have that affect my ability
to exercise on any given day.
There are other times my online classes remind me of my workouts with my mom. When my mom and I were not feeling particularly energetic, we'd smile and say, “Let's just do a 10-minute workout,” knowing full well that most times after just 10 minutes we'd
feel energized to do even more. Some days I don't feel up to working out, but I'll log on to a Beam class, telling myself, I'll just do a bit. And sometimes I've shocked myself with how much I smash the workout that day. (And yes, I may have picked
up some lingo from my U.K. friends.)
When I'd go to my mom's house to exercise, I'd immediately make a cup of tea and sit for a chat. After a proper catch up, we'd work out. With my Beam family, we often catch up after the workout. We know each other's families, especially kids and pets
who become honorary Beamers, and we share important happenings in our lives.
I feel stronger and healthier, both mentally and physically, now that I am regularly exercising again.
I feel proud of my body's improved ability to do cardio, as I am among those fortunate enough to have access to Trikafta®. I feel safe and supported by my welcoming
Beam squad. I couldn't have imagined being so in love with exercise again after losing my mom.
The Cystic Fibrosis Foundation has extended its collaboration with Beam to offer adults living with cystic fibrosis in the United States unlimited access to the platform's exercise and well-being content throughout 2021. To sign up, click “Get Started” in the upper right-hand corner of Beam's homepage and navigate through the registration process. Once registration is complete, a pop-up window will appear to confirm that you have been granted free access from the Foundation. No promo code is necessary.
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Adult with CF
Kristin was diagnosed with cystic fibrosis at 3 weeks old in 1982. A graduate of Boston College, she had a decade-long career as a financial analyst before retiring to focus on her health. As a CF advocate, Kristin serves on many CF Foundation committees including the Adult Advisory Council, the NACFC Planning Committee, and the Care Center Guidelines Steering Committee. She has been an active fundraiser through her employer and with friends and family. In her free time, Kristin enjoys reading, drinking copious amounts of tea, doing pilates and yoga, and spending time with her husband, Matt, son, Declan, and two cats at home in New Jersey.
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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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