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.
Individuals with cystic fibrosis and other chronic diseases often have a “hidden” loss of muscle mass, despite normal body weight and BMI. Increasing your protein intake and exercising regularly are easy ways to preserve muscle mass.
Individuals with CF use a lot of energy to breathe and fight infections. But protein and fat digestion problems mean there are fewer nutrients for the body to use. A lack of protein and fat are the main causes of muscle wasting, which also can be caused by chronic low-grade inflammation, use of oral corticosteroids and hormonal changes.
Preserving muscle mass is important in individuals with CF because it:
Your health care provider or a member of your CF care team can perform several body composition tests to determine your muscle mass. A dual-energy X-ray absorptiometry (DEXA) scan (used mainly for bone mineral density) can show the amount of muscle and fat mass throughout your body.5
Quite simply, you need to increase muscle buildup and reduce muscle breakdown. This can be done through a combination of food and exercise. Proteins are the building blocks of muscles, so it is important to eat enough easily digestible protein.
It's also important to do weight-bearing exercises, that work against gravity like walking, hiking, jogging, climbing stairs, tennis or dancing. For tips, watch the webcast on Exercise and CF. Anne Mejia Downs, a physical therapist and adult with CF, discusses the benefits of simple stretching and muscle-building exercises and fitting exercise into daily life. You also can learn more about exercise by watching an archived recording of our Facebook Live event, “Exercise and You,” at the 2016 North American Cystic Fibrosis Conference.
It is important to note that there are no official recommendations; however, experts recommend that those with a chronic disease should get 1.5 grams of protein per kilogram of body weight per day and more during an exacerbation.5 The recommended dietary allowance for those without CF is 0.8 grams per kilogram of body weight per day.
For example, if you weighed 150 pounds, you would:
In this example, you would need 102 grams of protein daily.
The amount of protein you need depends on how much your protein digestion is impaired and the efficiency of the enzymes you take to improve your digestion. There is no simple method available to measure the degree of impairment.
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