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 discussing it with my family and giving it a lot of thought, I decided not to pursue a lung transplant.
June 13, 2019
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Growing up I didn't let cystic fibrosis get in my way. I enjoyed most everything others did. Fishing, bowling, and baseball have always been a part of my life. Living an active life, I feel, has kept me away from many of the difficult challenges my disease presents.
My first hospital stay didn't happen until I was 47. I had pneumonia and they discovered a large tracheal diverticulum. It's basically a pocket that collects the same infections as my lungs. My first dose of intravenous (IV) antibiotics worked wonders on my pneumonia. I am now 55 and dealing with the real challenges of CF. I recently started using oxygen due to the decline in my lung function. My care team discussed a lung transplant with me. I have chosen not to have the procedure done.
My decision not to have a lung transplant was a difficult one, but the right one for me. My reasons include the medical expenses and drug costs that would last the rest of my life. I refuse to leave debt to my loved ones and live a longer life but have no money to enjoy it. Another part of my decision is my tracheal diverticulum issue. A transplant wouldn't include the removal of it and bacteria could leak from it to my new lungs, which would most likely be a big problem.
I'm at peace with my choice not to have a transplant and my family supports and understands all of my reasoning. One of my favorite doctors told me he respected my decision and would do all he could to keep me going with the lungs I have.
I have lived a blessed life. My wife and I have six awesome grandkids. I have achieved everything I've wanted in my bowling journey. I have had multiple perfect 300 games, bowling titles, and awards in my 45 years of bowling. I have also been on championship baseball teams, gone sky diving, and even owned winning racehorses.
I choose to enjoy the memories I have and continue to create something new each day because none of us are guaranteed tomorrow.
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Adult with CF
Randal was diagnosed with cystic fibrosis at birth in 1964. He grew up playing several sports, but bowling became his passion. In 1983, at the age of 19, Randal became the youngest winner of the Tacoma Masters, a locally televised tournament. Randal was inducted into the local SSUSBC Bowling Hall of Fame in 2005. Randal pursued a degree in Arts and Science, and after college, he worked 20 years as a postal clerk, retiring in 2004. Randal continues to bowl, averaging 217. He is married to Jeri Haller and enjoys spending time with his children, Josh and Stephanie, and his six grandchildren.
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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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