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.
Our goal is to educate policy makers about the needs of people with cystic fibrosis so that they make smart decisions about CF-related research, treatment, and access to care.
We recognize the value of tapping into the expertise that only people with CF and their families have. We invite you to share insights to help improve and develop programs and services that support the daily lives of people with CF.
Our mission is to find a cure for cystic fibrosis and improve the quality of life for those living with the disease. We can't do it alone. Help us add tomorrows by giving today.
In addition to working for a cure, the CF Foundation supports programs and policies to improve the lives of people with CF. Help us by raising awareness of CF, participating in a fundraising event, or volunteering with your local chapter.
Life after transplant includes taking care of your new lungs -- and your cystic fibrosis.
It will be vital to your success that you follow the care instructions given to you by your transplant team after transplant. You will have many responsibilities, including but not limited to:
Sean, 39, smiles as he looks to the future with his girlfriend, Maureen, six months after his lung transplant on Dec. 19, 2014. Even though it’s been two years since he’s been able to do many of the athletic activities he loves, the support of his large family and current treatment routine have been key to his post-transplant recovery.
You will not be able to resume normal activities immediately, such as lifting heavy objects or driving, so you will need your family and friends to remain with you to help you.
Though you will not have cystic fibrosis in your lungs after the transplant, you will have CF everywhere else. You will need to continue receiving treatment to manage your CF in your other organs. Of course, if anything comes up between visits, contact your CF care team immediately.
It is not uncommon to be readmitted to the hospital after a transplant. You should expect this to happen at least once. It can happen for many reasons, and it does not necessarily mean that your transplant was unsuccessful or that you did something wrong. Keep in mind that the doctors don't want you to have to stay in the hospital any more than you do. They will require that you stay there only if it is in your best interest.
You will have to return to the transplant center frequently -- possibly every day -- for follow-up and therapy appointments immediately after you are discharged from the hospital. Some of what you can expect at these visits includes:
You will need a supply of masks at home. You should wear a mask anytime you are in crowded public places, such as the hospital, church, restaurants, public gatherings, and airports. If someone in your home is ill, he or she should wear a mask when you are nearby. You do not need to wear a mask in your home or walking outside. Your transplant team can give you more specific instructions about when you are recommended to wear a mask.
The most important thing you and everyone around you can do to reduce the risk of getting and spreading germs is to wash your hands.
You may be asked to wear a medical alert bracelet. This is for your safety. If you are unable to communicate because you become ill or are in an accident, for example, the information on the bracelet will tell emergency response personnel that you are a lung transplant recipient and are immunosuppressed so that they can take the appropriate precautions and know whom to call for more clinical information about you.
Watch the webcast below to hear an adult with CF who received a lung transplant and Jennifer Taylor-Cousar, M.D., discuss:
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