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.
Here's how being open and honest about all my symptoms, cystic fibrosis-related or not, with my health care providers has improved my overall health care.
April 27, 2018
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Beginning this past fall, I really struggled with some debilitating joint pain. I was diagnosed with cystic fibrosis-related arthritis about 14 years ago, but the past two fall and winter seasons have been the worst. I shared a bit about these struggles through my Instagram account, and each time I did, I received multiple DMs (direct messages) from others in the CF community.
The messages included people asking for advice in dealing with the flare ups and sharing their stories about years of dealing with joint pain. Some said that they had never mentioned joint pain to their CF care teams because they thought it had nothing to do with CF, and therefore, figured their CF team wouldn't be able to help.
For years, I dealt with symptoms that I thought were CF-related. I shared these symptoms with my CF care team, but they were unable to treat or manage them effectively. Turns out, many of these symptoms were also related to endometriosis, something I was diagnosed with just last year.
If I hadn't shared my symptoms with my obstetrician and CF care team, we may have never figured out the real cause. Now, I can get the best care possible and have a better chance at managing these symptoms.
Growing up, my mom was always pretty open about everything that was going on with my health, with all my different doctors. Because of this, I eventually did the same when I started going to doctor's appointments on my own. She set a great example and also taught me to advocate for myself, because if I don't, no one else will.
I want to encourage you to share all symptoms with not only your CF teams, but any other doctors and practitioners you may see. Here are some of my top reasons for sharing your symptoms with every one of your health care professionals:
I hope this encourages you to start advocating for your own health and sharing the complete picture of your symptoms so you can get the best care possible.
Adult with CF
Aimee is a nutritional therapy practitioner and registered yoga teacher. She was diagnosed with CF 32 years ago when she was 2 weeks old. In addition to CF, she has endometriosis and has had two surgeries for scoliosis that involved spinal fusion and the placement of metal rods. Despite her many health challenges, she continues to live life to the fullest and look for the positive in every moment. Aimee has a continued passion to help others live a life that supports better overall health, especially those within the CF community. She resides in Salt Lake City with her husband, two pugs, and a cat. You can find more about what she's up to at www.thenourishedbreath.com and on Instagram @thenourishedbreath.
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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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