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.
Beth Evans, a 48-year-old with CF, is currently playing the lung transplantation “pre-wait waiting game.” She is sick enough to need new lungs, but not quite sick enough to get them just yet.
September 14, 2015
How Brandon Rees Received A New Set of Lungs at Age 27
Beth Evans is a 48-year-old grandmother from Alabama living with CF. Diagnosed at 18 months, she has already beaten the odds by living well past her predicted survival age of 3 years. But with her health in a steady decline, she is at that point where she is in need of a double lung transplant.
Beth spoke to us about her experiences from a hospital bed during a three-week stay intended to push her lung function back to its baseline.
While Beth resides in Birmingham, she will be treated in North Carolina because she carries a certain strain of the B. cepacia bacteria in her lungs. Carrying this infection disqualified her from being evaluated at the closest transplant center near her in Birmingham. Her doctor, who recommended she be evaluated for the lung transplant, then sent her records to three other transplant centers across the country. The transplant center that she ultimately chose was not only the second closest option, but they didn't turn her down for an evaluation because of the infection.
Even though Beth has been accepted as a potential lung transplant recipient, she hasn't actually made it onto the lung transplant waiting list. When the transplant center conducted their initial evaluation last fall, they determined that her lung function baseline of 35 percent was too high to warrant the transplant immediately. She is healthy enough to hold off on getting a new set of lungs, and she will be placed onto the transplant waiting list when it is deemed absolutely necessary. So for now, she travels back and forth once every three months to get her lungs and other vitals checked out.
When Beth's lung function dips down into the mid-20s, she will need to make the move to North Carolina and live within a short driving distance of the hospital, and will remain there until six months to a year post-surgery.
In addition to being physically evaluated, Beth was also evaluated financially. The transplant itself costs upwards of $500,000, so prospective recipients have to prove that they have enough financial resources to pay for the surgery as well as any medications, such as anti-rejection drugs, needed post-transplant. The transplant center set Beth up with a financial planner who went over all the projected costs with her and her family. After this evaluation, they recommended that Beth reach out to the Children's Organ Transplant Association (COTA) for financial assistance.
Working with COTA allows Beth and her family to fundraise for her transplant and future treatments without making her ineligible for important government benefits. Beth is also able to collect money through fundraisers without having it counted as income by the IRS.
Right now as Beth plays the waiting game of not knowing when her lung function will decrease enough to start the process of preparing for the transplant, she continues her daily routine of chest physical therapies and aerosol breathing treatments several times a day. She also makes frequent hospital trips that last, on average, between 2-3 weeks where she is placed on IV antibiotics.
Once Beth's lung function dips into the 20's, she will also be placed into a 30-day mandatory pulmonary rehabilitation program. If she successfully completes the program, and maintains a steady weight and physical condition, Beth will be placed on the transplant waiting list.
But through it all, she speaks with hope. She also had a positive message for others who might be considering getting evaluated. “Don't be afraid,” said Beth. “Do your homework, get a second or third opinion and find the right hospital for you.”
March 2016 -- We were deeply saddened to learn of Beth’s passing. A mother of five and grandmother of six, Beth worked to improve the lives of people with CF through her team, Breath for Beth.
Former Writer/Editor, Cystic Fibrosis Foundation
Dora previously worked at the Foundation as a writer and editor. During her tenure, she loved to listen to others share their memories and experiences, and consumed storytelling in all of its different forms. She constantly looks for the uniqueness in everyone's story. Dora has a B.A. in communications from the University of Maryland, College Park, and an M.S. in public policy and administration from the London School of Economics. Born in Budapest, Hungary, Dora was raised mainly in the Washington, D.C., metropolitan area where she currently resides today.
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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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