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.
Growing up, Keenan Flynn rejected what he saw as negative messages surrounding cystic fibrosis. Keenan credits a healthy mental attitude, and a non-acceptance of the negative messages about his health, for his physical development.
March 28, 2016
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Keenan Flynn wants to pump you up! At least, that's what I imagine him saying to me if we ever met. Keenan, who was diagnosed with cystic fibrosis when he was 2 years old, is into fitness the way that I imagine a younger Arnold Schwarzenegger was into fitness. Listening to him talk about the role that exercise has played in his growth and development, both physically and emotionally, puts the general public's overall attitude toward fitness to shame.
From the time of his diagnosis to age 11, Keenan diligently followed the standard CF care and routine that were laid out for him by his care team. That kind of management helped to keep him healthy enough that CF didn't really affect him. But as he reached those pre-teen years, he became more aware of CF, its consequences and what it meant to be a person with CF.
Keenan felt that a lot of the messages associated with CF were too negative, and he felt like not much was expected from him. In particular, he was becoming acutely aware of the messages that he was receiving regarding his health. Even at such a young age, he was bothered by the overall lack of positive messaging surrounding exercise and nutrition for people with CF. He felt like he was treated like a china doll: too fragile and breakable. Keenan didn't want to accept that having CF meant being defined by negative measures: "'You're so thin. You're so sick.' I wanted to be an athlete and I didn't want the fact that I had CF to stand in the way of that.”
Growing up, many of Keenan's role models were professional athletes. By watching them, he concluded that athletes must have healthier lungs to be able to push their bodies to perform physically. It logically followed that exercising was how they got there. After getting the okay from his doctor, he began exercising … and it paid off. In high school, Keenan ended up playing on the football, lacrosse and basketball teams. Eventually, he settled on pursuing football and the 6' 4," 200-pound Keenan wound up playing football at Georgetown University. He initially started off as a wide receiver in high school, but at college, his coaches switched him to linebacker where he grew to 240 pounds. Today, at age 35, Keenan hasn't slowed down one bit. He participates in marathons, Tough Mudders, and does cross-fit and yoga several times a week.
Keenan credits a healthy mental attitude, and a non-acceptance of seemingly negative messages, for his physical development. He also credits his parents with initially helping him develop this attitude. “My parents didn't take on my disease as if it were their own when I was a child,” explains Keenan. “I wasn't treated differently than my brother."
The focus shouldn't be on being sick, Keenan notes, but rather on deciding to be healthy and believing that you can do more. When Keenan looks back on his teenage years, it still bothers him that he didn't receive that mental encouragement from his care team to be more physically active and expect more from himself. He had to figure it out on his own. “I don't think of it in terms of, 'it's harder to breathe with CF or it's harder to run with CF.' That's irrelevant because I don't know any better. Everyone has their own problems. This is simply my challenge,” said Keenan.
Keenan is ready to spread the message that everyone with CF should be encouraged to do the most they can do, the most their bodies will allow. In his pursuit of healthy lungs, Keenan has become what he had always dreamed of, an athlete with healthy lung function.
Former Writer/Editor, Cystic Fibrosis Foundation
Dora previously worked at the Foundation as a writer and editor. During her tenure, she loved to listen to others share their memories and experiences, and consumed storytelling in all of its different forms. She constantly looks for the uniqueness in everyone's story. Dora has a B.A. in communications from the University of Maryland, College Park, and an M.S. in public policy and administration from the London School of Economics. Born in Budapest, Hungary, Dora was raised mainly in the Washington, D.C., metropolitan area where she currently resides today.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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