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.
The benefits of regular exercise and good physical fitness for everyone have become well known in the past 50 years. So, how do these benefits apply to you?
People with cystic fibrosis can work with their care team to find ways to exercise safely. Regular exercise is tough and we all find reasons to avoid it. But it makes sense, for some pretty basic and powerful reasons:
Even when you are in the hospital you should try to move about as much as possible. This will help you maintain your fitness level and you will do better when you are discharged. When you are in the hospital, ask your CF team to have an order written so a physical therapist can help you exercise while you're there.
The bottom line is that our bodies were made to move. Being inactive is unnatural for your body and can give rise to disease and disability.
You don't have to do vigorous activities like running marathons or other competitive sports. Federal guidelines on physical activity for Americans encourage all adults to do at least 150 minutes of physical activity each week, and it should be at least moderately intense. This may sound like a lot, but it's only about 21 minutes a day.
For instance, you could take a brisk 10- to 11-minute walk twice a day. Or, you could jog part of the way to add in some vigorous intensity. The guidelines also recommend doing resistance exercise, like weightlifting or pushups, two days a week. As your physical activity improves, you can get more health benefits by exercising longer or at a greater intensity.
Do some exercise on purpose at least three to four days a week at an intensity that allows you to talk during the activity. You don't want to be so out of breath when you exercise that you can't talk.
As a guide, stay comfortably active doing a variety of activities like aerobic exercise that last more than 10 minutes, even if you take some rest pauses. On one or two of these days, include some resistance activities like weightlifting. Any exercise is better than none, but it is possible to overdo it. If you have concerns about beginning an exercise routine -- or making changes to your current routine -- talk with your CF care team and request a visit with a physical therapist.
All children should get at least 60 minutes of moderate to vigorous physical activity every day. Toddlers should be doing intense, short bursts of activity such as running, jumping, and climbing. Toddlers and young children are not expected to do 60 continuous minutes of exercise. The goal at this age is to make physical activity a family activity because children are influenced by their parents and siblings.
Children should be exposed to a wide variety of activities. Running, jumping, and ball games help to strengthen bones. Activity should be intense enough to cause some shortness of breath, but still allow the child to carry on a conversation.
Resistance training is recommended for children, too. School-aged children can do strengthening exercises using their body weight (e.g., calisthenics) most days of the week. Teens may begin a more formal resistance training program (using resistance bands, weights, or body weight) two to three times per week. It is recommended to first work with a physical therapist or personal trainer to learn good technique and prevent injury.
Watch the webcast below to hear Anne Mejia Downs, P.T., M.P.H, C.C.S., and an adult with CF:
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