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.
Becoming pregnant after a lung transplant is possible, but is associated with increased complications. Learning more about post-transplant pregnancy can help you understand the potential risks and health implications.
Pregnancy is possible after a lung transplant, but it is important to understand that it will require a great deal of consideration and the careful attention of your care team and transplant team.
Research shows that lung recipients who become pregnant face greater risks when compared to other solid organ transplant recipients, including premature delivery, declined lung function, and rejection.
For this reason, it is highly recommended that women who have undergone lung transplantation avoid getting pregnant in the first 2-3 years after surgery.
Risks of Pregnancy Post-Transplant
According to the studies that have been conducted on the topic, there are several risks associated with pregnancy after a lung transplant. The most common of these include increased risk of:
When it comes to the health of the baby, premature birth and low birth weight were reported as the greatest risks, with some small studies showing a 50 percent rate of the baby being born prematurely.
As for the mother, the greatest risk of pregnancy after transplant is rejection of the transplanted lungs. Lung transplant recipients experience rejection during pregnancy more frequently than other solid organ transplant recipients, so understanding the implications of these risks and discussing them with your transplant team is an important first step toward deciding whether a post-transplant pregnancy is something you want to pursue.
It is important that women with CF who have had a lung transplant are least 2-3 years post-surgery and are as healthy as possible before moving forward with a pregnancy. Your CF care team can work with you to assess your health and make sure that risk-related factors such as your liver function, blood sugar, and graft function are adequately controlled.
Each woman with CF is different, so it is important to talk with your CF care team and transplant team to get a better idea of what a post-transplant pregnancy could mean for you individually. They can help give you more information about possible risks and provide greater context around the available statistics. Because pregnancy post-transplant is considered a risky endeavor, having an open and honest discussion about issues such as your own mortality, potential complications, and the possibility of having a child with certain health problems or disabilities is key.
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