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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
Pregnant women with cystic fibrosis will need to be more closely monitored than the average pregnant woman. Learn how you can partner with your CF care team and obstetric team to effectively manage your pregnancy.
Working closely with your cystic fibrosis care team is one of the most important things you can do to ensure the best possible outcome for both you and your baby throughout your pregnancy. This means carefully monitoring your weight, nutrition, lung function, and blood glucose to maximize the chance of a safe pregnancy and lower the risk of complications.
Because pregnancy comes with certain respiratory, cardiovascular, and metabolic changes, pregnant women with CF will be monitored more closely than women without CF. Your CF dietitian will pay close attention to your nutritional status and weight gain, and may suggest nutritional supplementation or tube feeding since common pregnancy symptoms can make it even more difficult to maintain food intake -- let alone increase calorie consumption to meet the extra requirements of pregnancy. Your team will also keep a close eye on your pulmonary function, as well as consistently monitor your glucose levels and test for diabetes.
Many women with CF are capable of getting pregnant and having a successful pregnancy. Others may determine that, for them, the risks outweigh the benefits. To help you evaluate your options and the implications to your health, invite your care and obstetric teams to be part of the discussion, including an obstetrician (OB) who specializes in high-risk pregnancies.
This high-risk OB -- also known as a Maternal-Fetal Medicine (MFM) physician -- can play an active role as a member of your multidisciplinary care team and work closely alongside them to provide you with individualized care.
No two cases of CF or pregnancy are exactly alike, so making sure that your care team and OB are openly communicating with one another is crucial for keeping both you and your baby as healthy as possible throughout your pregnancy.
“Maintain good communication with your OB and CF care teams throughout your pregnancy, and request that they talk to each other, if necessary. When I was diagnosed with gestational diabetes, I occasionally felt like the 'middleman' between my CF doctor and my OB in managing how to treat it. I had to be firm with my doctors and request that they discuss the details together before they offered me their suggestions and recommendations.” -- Anna Ward, adult with CF
Ideally, your OB should practice at the same hospital or facility as your CF care center. This way, your care team will be close by if you face any CF-related complications, and the proximity will make it easier for your care team and OB to maintain a line of communication.
If your obstetrician is at a different institution than your care team, keep in mind that you will need to give explicit permission to transfer your information. However, ensuring that your care team and obstetric team are working together and are aware of all your treatments and medical history is key to encouraging continuity of care.
For the most part, it is important that you continue with your treatments and therapies as prescribed during pregnancy. However, you will first need to carefully weigh the risks and benefits of your treatment plan against the trimester of your pregnancy and your health with your CF care team and obstetrician. For example, there are some medications that you may not be able to take while pregnant, such as antibiotics or oral medications for Pseudomonas aeruginosa.
You and your care team will work together to review your current treatment routine and update it to account for duration, timing of treatments, choice and use of inhalation devices, physiotherapy, and exercises. Your care team will also assess your airway clearance techniques (ACTs) and work with you to adapt them to your individual needs and the trimester of your pregnancy.
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