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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
Watch our vlog to hear us discuss the upcoming film, Five Feet Apart.
March 5, 2019
5 Things I Wish My Care Team Knew About Me
Creative Fuel Writing Through Suffering
As sisters, there is a lot that we share. But as cysters, there is a lot about our individual experiences with the disease that set us apart. Today on the blog, we wanted to address a hot topic in the CF community -- the upcoming Five Feet Apart movie -- and share our different perspectives in anticipation of the film's release next week.
Watch our vlog below to hear our thoughts, questions, concerns, and more as we tackle topics such as infection prevention and control (IPC), anxiety, germs, the Five Feet Apart book, and what the community has been saying about the film.
Check out this discussion guide the Foundation created to help people with CF and their families talk about the movie.
Join the conversation on Facebook.
Adult with CF
Bethany was diagnosed with CF at 4 months old. A current resident of Spring Hill, Tenn., she grew up near Cleveland, Ohio, in the little town of LaGrange, but has called Nashville home for the last 12 years. Bethany made sports and exercise her life and, at 19 years old, became a professional dancer for the NBA's Cleveland Cavaliers. She carried health and wellness into her career as a full-time elementary physical education teacher, graduating from Middle Tennessee State University with a B.S. in human health and performance. She is also a part-time certified integrative nutrition Health Coach and her company, Breathe, Love, & Be Well (@breathelovebewell), is where she mentors others on how to live a healthy lifestyle. Bethany is the oldest of three sisters, and her youngest sister, Mackenzie, has CF as well. They encourage each other and fight together! You can learn more about their journey by following them on Instagram @sister_cyster.
Mackenzie (Kenzie) lives near Cleveland, Ohio, and was diagnosed with CF at birth. Last year, she attended Kent State University as a freshman and is currently focusing on her health at home to make sure she is in stable condition when she resumes taking college courses in the fall. In her spare time, she likes making YouTube videos for her channel, singing, makeup, her friends and family, and watching Keeping Up With The Kardashians. Kenzie is 19 years old and is the youngest of three sisters, the oldest of whom also has CF. They encourage each other and fight together! You can learn more about their journey by following them on Instagram @sister_cyster.
Share this Post
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.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails