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.
Friendships are an important aspect of life, but they are especially meaningful when you have a disease like cystic fibrosis. By finding a group of people who take the time to understand what I'm going through, I've been able to maintain a strong support system through the ups and downs of life with CF.
January 16, 2019
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Having true friends is one of the greatest joys of my life. I feel incredibly lucky to have people (including my significant other) who have been by my side for over 30 years, and I appreciate their constant presence in my life more than they will ever know.
Sure, there is a level of understanding, patience, compassion, honesty, and commonality that all healthy, long-term friendships require; but, having an illness like CF takes this to a whole new level, because sometimes, CF has different plans for my life than I do. My friends realize that it is CF that is unpredictable, not me; and for that, I am eternally grateful.
In the past, I've had “friends” who did not try to understand CF, such as how I could look fine but end up in the hospital two days later with an exacerbation. They didn't get that I felt crappy most of the time and I had, for the most part, mastered not looking sick. So, on top of being miserably ill, I also had people mad at me for “bailing.”
Additional anxiety and stress is the last thing you need when you are sick. And since getting sick and having to change your plans can be a common scenario in a life with CF, you have to choose friends who care enough about you to educate themselves about what you are facing. Although those people may be hard to find, they are well worth the wait and you will appreciate their true friendships as I do mine:
I could not ask for better friends. Thank you for acknowledging I have CF and for also looking past it so that it doesn't define our friendship. I know that it takes an extra amount of patience and understanding when dealing with CF, and I hope everyone who reads this -- whether you have CF or not -- is lucky enough to find the strong bond of friendship that I have found with you all.
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Adult with CF
Diagnosed with cystic fibrosis as an infant in 1972, Leah has participated in many clinical trials. She endeavors to perpetuate programs, education, and research about CF until a cure is found. Leah lives in North Carolina with her significant other and his daughter. She also has a 20-year-old son who serves as air crew in the U.S. Air Force. She is unable to work outside the home but does not let that stop her from being productive. She enjoys freelance writing, word games, spending time with family and friends, and is considering starting a blog.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site 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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