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.
It can be difficult to find time for daily CF treatments in your already jam-packed lives, but your respiratory therapist can help.
Mary Lester, R.T.
January 6, 2016
Meet Wes Parsel
Life With CF is Not a Sprint
There are many therapy options for aiding in mucus movement and removal, including chest physical therapy, the vest, oscillating expiratory devices (e.g., acapella®, AeroBika®, FLUTTER®), vibrating technology, breathing techniques and exercise.
As the respiratory therapist (RT) on an adult CF care team, I have spent the past 16 years collaborating with my patients on which of these methods works best for them, and how they can fit their airway clearance techniques (ACTs) into their busy lives.
Not every therapy works for every person, and the method of airway clearance that works one day may need to change on another day. More often than not, you'll need to experiment to find the right technique -- or techniques -- that works best for you.
Your RT's job isn't just to help you learn how to do your ACTs; it's also to help you find the best ACT or combination of ACTs for you.
We know that your lives are hectic and that adding another daily CF treatment can make it even more so. It's also part of our job to help you with this by sharing what we know from our experience and what we have learned from other people with CF.
For example, most devices on the market offer a 30-day trial period. This is a great way to see if a certain device can benefit you. Use it, and figure out if helps move mucus. If it doesn't, send it back. If it does, let's work together to fit it into your daily routine and find ways to pay for the device. It can be one more weapon in your airway clearance arsenal.
By working with your RT, you can learn from each other and come up with plans for your type of CF lung disease. Together, you can learn what methods work and what don't, and discuss how to fit this into your daily routine.
Mary Lester, R.T.
Respiratory Therapist, Keck Medical Center of University of Southern California
Mary is a respiratory therapist who is currently working in adult CF care at Keck Medical Center of USC in Los Angeles, Calif. She moved there from Charleston, S.C., where she had worked on pediatric and adult CF teams for more than 15 years. Mary has worked on numerous projects with the CF Foundation, including the Pulmonary Guidelines Committee, Adult Benchmarking Team, CFRT Mentoring Program, NACFC Planning Committee and the CF Adult Mentoring Project. She has published several papers on CF respiratory care. Mary’s professional passion is working with people with CF to help make their tremendous therapy load effective and reasonable so they can live a full and happy life.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
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