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.
In 2008, Brandon Rees underwent lung transplantation because his lungs had deteriorated to the point that he need a healthy pair to survive.
September 14, 2015
The Pre-wait Waiting Game
Food for Fall: the Avocado
Diagnosed with cystic fibrosis when he was 6 months old, Brandon Rees led a fairly healthy life up until his early 20s. Around age 23, his health started to deteriorate and within three years Brandon had to quit his job and move back in with his parents to get the care that he needed.
By the time he was 27, Brandon had developed hemoptysis, which resulted in him frequently coughing up blood. His lung function dropped to 18 percent, and he was placed on oxygen. Brandon's doctor told him that the time had come to seriously consider a lung transplant. “I was so sick that I wanted the lung transplant very badly,” said Brandon. “I was more scared of something happening to me before the transplant than I was of the transplant itself.”
After an evaluation that lasted a month and a half, Brandon was put onto the transplant waiting list. “The hardest part of being on the waiting list was maintaining my weight,” said Brandon. “It was very difficult for me to keep a good BMI because I had been running a fever for about a year, so I had no appetite. I had to force myself to eat, and was eventually given a G-tube for feeding.”
In 2008, after just three months on the waiting list, Brandon underwent the lung transplantation and spent a month in the hospital recuperating before moving back into his parent's home. Although the surgery was successful, over the next several years, Brandon experienced a number of complications.
Not long after the transplant, Brandon developed gastroparesis, a partial paralysis of the stomach, and bronchial stenosis, a narrowing of the airways. He had trouble sleeping for six months, and didn't start to feel comfortable with his new set of lungs until more than a year post-transplant. “It didn't feel great to breathe right away,” explained Brandon. “I wish someone would have told me that I wouldn't necessarily feel an immediate difference in breathing. I didn't know that I would have to concentrate on breathing, and relearn how to take deep breaths.”
Although Brandon made frequent trips to the hospital for the first five years following the transplant, he was able to move out of his parents' house eight months after the procedure.
Seven years later, Brandon says he feels better than ever. His health gradually improved following the procedure, and has remained consistent for the past three years. He now works full-time, plays in a band and participates in a beach volleyball league. These are all things that Brandon wanted to do previously, but couldn't.
And even though he takes more pills now than he did before the transplant, he still thinks it's easier than doing treatments several times a day. “For me, getting the lung transplant was the best decision,” said Brandon. “I think that this was the only way I was going to survive.”
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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