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.
As I have grown in my professional career, I have gone from speaking as little as I can about cystic fibrosis at work to being open about having CF and how it affects me.
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I recently transferred to a new role within the large organization I work for. While doing all the fun and exciting new-hire paperwork, right on cue, I had a coughing fit. That “pneumonia-sounding, face-turns- red, someone's-about-to-call-911” type. The HR representative, in the most genuine way, asked, “Sweetie, can I get you a cough drop?” That was all I needed to respond with, “Sure, I have cystic fibrosis -- I cough a lot, but I promise I'm not contagious.”
Years ago, I would have offered some lame excuse of, “Oh, thanks, I just have a horrible cold!” Owning CF and realizing what a huge role it plays in my life has been a major step for me. The process of being able to be open about it with someone at work was even bigger. But knowing that CF isn't going away -- and that it will likely cause a few more problems for me as I get older -- has forced me to be honest with my colleagues and myself.
Usually after the first day boredom of paperwork has died down, I pop into my supervisor's office and offer up a, “Hey, ya got a sec?” I take this as an opportunity to share with him or her that I have CF, what it is, how it affects me and that, from time to time, I will miss work or an appointment. By doing this, when I do need time off it is not a shocker. I also try and show up to work a few minutes early and stay a few minutes late on the days I feel up to it. I feel it shows that I'm committed to my job and when I need time off for an appointment or sick day, it makes it that much easier to request.
I use the same mentality with my co-workers and close colleagues. If someone asks about my cough or makes a “You look really tired today!” comment, I use that as an opportunity to share with them that I have CF and educate them on it. It usually ends up being a short and sweet conversation.
Working is something that I enjoy, and I plan on doing it as long as I can. But, it's just plain hard when you have CF. We share the same 40-hour week roles as our non-CF colleagues; however, we do it amid so much additional responsibility. I am starting an IV “clean out” in a few days, and I know that I will have to take my IVs into work and infuse on my lunch break. But I know that by being upfront and honest about the fact that I have CF, it will make it that much easier and less awkward for everyone involved.
Adult with CF
Matthew was diagnosed with CF in 1988 at the age of 3, and later with CF-related diabetes (CFRD) at 14. Matthew works as a grants specialist for the Virginia Department of Health -- a job he is passionate about because of the health care aspect. Matthew earned his M.B.A. from Liberty University. Prior to this, Matthew earned his B.S. in management and organizational development and his A.A.S. in information and communication systems. In his spare time Matthew enjoys traveling and recently visited London, Paris and Rome. In 2014, Matthew went skydiving in Denver and climbed Silver Dollar Mountain.
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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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