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 Burkholderia cepacia complex (B. cepacia) consists of different species of bacteria that are found in the natural environment. Some of these species pose serious risks to the health of a person with cystic fibrosis.
There are almost 20 different B. cepacia complex species. The species found most often in people with cystic fibrosis are:
Burkholderia bacteria are often resistant to many antibiotics, which makes them difficult to treat once they infect the lungs. However, some species may be successfully treated with combinations of antibiotics.
Basic infection prevention and control practices reduce the risk of getting or spreading B. cepacia. These bacteria pose very little medical risks to healthy people. However, some people who have a serious illness such as cancer or acquired immunodeficiency syndrome (AIDS) may be at risk of an infection from these bacteria.
How B. cepacia complex species affect people with CF varies. Researchers do not yet know why some people with CF are more likely to get B. cepacia than others.
In many people with CF, infection with B. cepacia may not worsen lung disease. In up to one-third of people infected with B. cepacia, the rate of lung function decline appears to be only slightly faster. However, for a smaller number of people, B. cepacia can cause a rapid decline in lung function and health. This can lead to more severe lung disease and maybe death.
Among the different species of B. cepacia complex, some may be more harmful than others (for example, B. cenocepacia and B. dolosa). The Cystic Fibrosis Foundation is working with researchers to learn more about the B. cepacia complex and help identify new treatments.
It is not always known how people with CF become infected with B. cepacia complex. Research has shown that people with CF can get B. cepacia from others who are infected with these bacteria. The germs spread either by direct contact, such as kissing, or indirectly from touching objects with the germs, such as doorknobs. This is known as cross-infection and can happen in social settings like events, gatherings or meetings.
In some cases, shared infection was not found in the lungs of a person with CF until two years after being exposed to someone else who was infected with the germ.
For many people with CF, infection with B. cepacia complex cannot be traced back to exposure to another infected person. In these cases, infection may have occurred by exposure to Burkholderia in the natural environment.
Watch the webcast below to learn more about B. cepacia and hear John LiPuma, M.D., explain:
When a doctor or nurse gets a throat or sputum culture from a person with CF, the laboratory tests the culture in a specific way to help find any B. cepacia complex species. Ask your CF care center about the results of your last throat or sputum culture. Keep in mind that medical evidence shows that everyone living with CF could have germs that might spread to others with CF. Plus, sputum cultures may not find all germs that could spread among people with CF. Download the CF Foundation's latest Patient Registry Report to see how many people with CF have B. cepacia complex (page 16).
The CF Foundation is supporting research on B. cepacia complex to find new ways to prevent or get rid of lung infections caused by these bacteria in people with CF. Some researchers are studying whole new classes of antibiotics to fight B. cepacia complex bacteria.
In addition, basic scientific research is underway to describe the differences between the B. cepacia complex species. The CF Foundation supports the B. cepacia Research Laboratory and Repository at the University of Michigan, Ann Arbor. The laboratory is a resource to the CF medical community to help researchers identify B. cepacia complex species, investigate their spread and store samples for future research studies.
The laboratory also enables scientists to learn more about how B. cepacia causes infection and to help find new treatments for people with CF. Care centers can send sputum cultures to the lab to confirm and identify the specific species of B. cepacia complex.
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