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.
After my son was diagnosed with cystic fibrosis, I was stunned by some of the insensitive questions and comments I received from friends and family. Over time, I learned that their unsolicited feedback provided teachable moments that I hope to pass along to other families.
September 13, 2019
Avoiding CF Information Overload
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Since my son was diagnosed with cystic fibrosis 11 years ago, there have been numerous occasions where I have felt unsupported, either by family or friends. It could have been that my friends and family didn't know what to say or maybe they couldn't understand what they couldn't see. I have learned over the years that a lack of support generally comes from a lack of understanding. It is because of these instances that I have realized, more than ever, that it is my job as the mother of a child with CF to not only advocate, but to educate.
Although there are countless things that a CF parent does not need to hear, here is a selection of the ones that I and other CF parents commonly hear. I hope this list helps prevent other families from hearing some of the hurtful things that our immediate family has heard. Feel free to pass it along to friends and family after a diagnosis.
What not to say to a CF parent:
Having the support of your family and friends is crucial for the parents of a child with CF. When you feel unsupported, you can feel very lonely. Being the caregiver of a child with CF is isolating in its own right, but when you hear comments like the ones I described - or in some cases nothing at all -- it can make an already painful situation that much more difficult to navigate.
So, what are some supportive things that you can say to a CF parent?
Most important, just be there cheering them on. What CF parents need most of all is a wonderful support team surrounding them.
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Mother of a child with CF
Misty is a content writer who attended Southeastern Louisiana University and studied Mass Communications. Her son, Jax, was born in 2008 and was diagnosed with CF soon after birth. Misty and her family have been active with the CF Foundation since 2009 through her son's Great Strides team, Team Jax. Team Jax has won many local fundraising awards such as the Breath of Life Award and has raised over $30,000 for the CF Foundation. Misty is passionate about traveling, bookstores, podcasts, and CF advocacy. She lives in Baton Rouge, La., with her husband, Landon, their daughter, Elliot, Jax, and their Boston Terrier. Misty writes at The Red Stick Mom, mistyroussa.com, and can be found on Instagram at @mistyroussa.
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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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