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.
When you have cystic fibrosis, there are potential complications related to pregnancy. But as part of the planning process, you can learn more about these complications and how to partner with your CF care team to evaluate these risks based on your personal situation.
With proper management, careful monitoring, and working closely with your care team and obstetric team, many women with cystic fibrosis are able to carry a child without significantly impacting their long-term health. At the same time, however, the unique demands that pregnancy places on the body can have serious implications for women with CF.
The progressive decline in lung function and impaired nutrition associated with CF can pose several challenges, including a higher risk for health complications and an increased treatment burden. For this reason, women with CF who plan their pregnancies for a time when they are in the best health possible tend to have the most successful outcomes.
Generally, there are four main factors that help determine how well a woman with CF will handle pregnancy. These factors are:
Lung function: Ideally, a woman with CF should have a forced expiratory volume (FEV1) of 50 percent or more before becoming pregnant. Women with lower FEV1 values can also get pregnant, but their risk for problems and other complications may be higher. According to many experts, your lung function is the most important factor that affects both your health and the baby's after delivery. Research has shown that the outcomes for you and your baby will likely be better if your FEV1 is over 50 percent before you get pregnant.
According to several studies, the majority of CF pregnancies result in live births and there is no clear increased risk of fetal death or birth defects. However, this is not to say that getting pregnant with CF comes without risks.
The most common complication of pregnancy with CF is preterm or premature delivery, which, in one study, was associated with low pre-pregnancy lung function.1 Diabetes was also reported to be more common in women who delivered prematurely.
Overall, adequate nutrition, well-controlled blood sugars, and a reasonable pre-pregnancy FEV1 are associated with better outcomes.
In addition to premature delivery, some of the most common complications associated with pregnancy and CF include:
Although planning your pregnancy as a woman with CF is ideal, life does not always go according to plan. If you are a woman with CF experiencing an unexpected pregnancy, your first step should be to contact your CF care team. Your care team will work with you to assess the possible impact that being pregnant could have on your health, and ultimately help you weigh the risks and benefits.
The decision about how to proceed in the face of an unplanned pregnancy will depend on the trimester, as well as many other factors. For example, some people with CF may feel it would be difficult to care for both themselves and a child with CF, so getting your partner genetically tested could play a major role in your decision process.
In addition, women with severe lung disease may need to consider terminating the pregnancy to preserve their own health. Only you can decide what is right for you, but discussing both the physical and emotional implications of your pregnancy with your CF care team can help you make an informed decision.
1 Gilljam M, Antoniou M, Shin J, Dupuis A, Corey M, Tullis DE. Pregnancy in cystic fibrosis. Fetal and maternal outcome. Chest. Jul 2000;118(1):85-91.
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