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.
Weighing the benefits against the risks of having a lung transplant can be overwhelming. Your cystic fibrosis care team can help you and guide you to a transplant center with expertise in cases like yours so that you can be fully informed prior to making your decision.
It is critical to have an open and honest discussion with your cystic fibrosis care team about your desires and what you can expect throughout the lung transplantation process. Doing so will enable the team to recommend the best course of action for you. The information in this section will help you start thinking about the benefits and risks of having a lung transplant. This is not an exhaustive list, so it is important that you discuss all of your concerns with your care team. They know you well and may be able to help you weigh the benefits and risks that are most relevant to you.
Doctors use statistics to understand what happens to most people. There is no benefit or complication that everyone experiences. Statistics are used to predict what is likely to happen based on what has happened in the past.
When you hear that there is an 80 percent chance of something happening, it means that for every 100 people, 80 people experience that event and 20 people do not. No one knows which 80 people will and which 20 people will not. No one can be certain about what will or won't happen in your case. Predicting the outcome of medical treatments is especially tricky. This is because doctors can base their predictions only on what has happened to other people, and no two people are the same.
Keep this in mind when you read the statistics in this section or when your doctors talk about statistics. You never know whether you will be one of the 80 or one of the 20. You are a person, not a statistic.
A lung transplant is risky, but it offers you a chance you may not otherwise have to improve your health and extend your life. If the transplant is successful, you will have a healthy set of lungs that are not affected by cystic fibrosis. It is important to remember, however, that you still will have CF in other parts of your body. You still will need to continue your CF care routine for the affected areas.
Lung transplants have become increasingly common as a treatment for severe lung disease.
Every year, people with CF get lung transplants. The Cystic Fibrosis Foundation maintains a Patient Registry to keep track of what is happening with people with CF across the U.S.
Doctors and researchers are always working to improve surgical techniques, immunosuppressive drugs, post-transplant care procedures, and the methods used to preserve donor organs until they can be transplanted. Advances in these areas have helped to increase the number of successful transplants done every year, as well as the quality of life of transplant recipients.1 Among people with CF, more than 80 percent of lung transplant recipients are still alive after one year, and more than 50 percent are alive after nine years.
Many people who have had successful transplants report being able to breathe more easily and resume doing things they enjoyed before their lung function declined. Some people have been able to participate in challenging physical activities after transplant.
Lung transplantation is a risky procedure and not all transplants are successful. It is possible that none of these complications will affect you; it is also possible that you will experience more than one complication.
You are always in control of deciding whether to be evaluated for a transplant. Some people decide that they do not want to go through the process of being evaluated, waiting for lungs, and undergoing a transplant procedure. Instead, some people decide that they want to live the rest of their lives on their own terms. There is nothing wrong with choosing this path.
If you decide that you do want to be evaluated for transplant, you must understand that having a transplant is not guaranteed. The transplant team may determine that some aspect of your health, support system, or finances will prevent you from having a successful transplant surgery and recovery. Because there is a shortage of donor organs, transplants are performed on those who have an allocation score that indicates they have the right combination of need and likelihood of success. In other words, you must fall into what doctors call the “transplant window” -- you must be sick enough to qualify for a transplant, but well enough to survive the surgery and recovery process.
Watch the “Lung Transplantation: Risks, Benefits, and Care” webcast below to hear Joe Pilewski, M.D., discuss:
1. UCLA Transplantation Services: Lung and Heart-Lung Transplant
2. National Institutes of Health: Lung Transplant
3. Barnes-Jewish Hospital: Lung Transplantation Patient Guide
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