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.
For those of us without a medication that targets our cystic fibrosis mutation, it's important to remember that our life with CF is a marathon.
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There has been a lot of progress in treating CF lately with the introduction of ivacaftor (Kalydeco®) and the combination therapy, ivacaftor and lumacaftor (Orkambi™). For some, these CFTR modulator drugs attack the root cause of CF, and the results have been amazing. I think this has led many in the CF community to count on a quick fix for their CF, focusing on their mutation and waiting for a blockbuster drug to give them good health.
Don't get me wrong -- knowing your CF mutation is important. But it doesn't have to be the sole focus of life. In fact, it absolutely should not be. If you're not one of the fortunate ones who benefit from the CFTR modulators available, you have to put the work in every day to maintain your health. In that way, CF is a marathon and not a sprint.
Much like training for a marathon, life with CF includes continual planning, work and discipline, coupled with twists, turns and opportunities to re-invent yourself.
I was diagnosed with CF in 1967 at a young age. At the time, not much was known about the disease. My doctors told my parents I wouldn't live past my 16th birthday. Based on that, my parents believed that the quality of my life was just as important as the quantity of years. We followed the medical protocol of that era, but my parents also wanted me to “be a kid,” which meant roughhousing with my three older brothers and playing on their sports teams. This combination of following my treatments, while doing what I loved, has served me well.
As I grew up, I realized that there was no quick fix that would result in good health. I followed daily goals to keep my body, mind and spirit healthy, including paying attention to nutrition and exercise and making smart choices in my work and social circles.
For me, being active and participating in sports have helped shape me into the person I am today: competitive, disciplined and determined. Some people may view exercise as a luxury, but, when you have CF, exercise isn't optional. When I started running, I couldn't jog even once around the track, but with dedication and training, I ran competitively in college. I have even run marathons as an adult. You don't need to run competitively, but I can't stress enough the importance of going outside and opening up your lungs. Compete with yourself to breathe!
It hasn't always been smooth sailing. Most days are wrought with obstacles, but I haven't let them deter me. Instead, I view them as catalysts to live life to the fullest. And yes, there are times when I struggle to stay medically compliant. I am human, and I can promise you that exhaustion and fears have visited me.
When I face challenges -- and, trust me, I've had plenty -- I approach them as if I took a spill while running a marathon. They're just temporary setbacks. I look for the solutions and adjust accordingly.
I would never turn down a cure for CF. But for many of us with CF, our reality isn't the sprint of a blockbuster drug. It's the marathon of relentlessly striving for the most awesome life we can live. The best is yet to come ...
Adult with CF
Jerry was diagnosed with cystic fibrosis in 1967 at the age of 11. Currently a CF Ambassador at the Boomer Esiason Foundation (BEF), Jerry leads its scholarship and grants division and is the founder of Team Boomer -- the athletic arm of BEF dedicated to encouraging exercise among CF patients while simultaneously raising money for scholarships. He has also started the program You Cannot Fail, which includes apparel, a website, an autobiographical coffee table book, and two children’s books. On top of all of this, he records educational podcasts and videos and encourages other people with CF to share their stories on Club CF. He has completed two 500-mile “Bike to Breathe” bike tours. Jerry believes that exercise is the single most important thing in his life that keeps him healthy with CF. Follow Jerry on Jerry Cahill's Cystic Fibrosis Podcast.
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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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