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.
I used to think that people would pity me and see me as weak, if I told them I had cystic fibrosis. Eventually, I learned that keeping this disease a secret was a burden I did not need to carry.
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Growing up, I would say I had a normal-looking childhood. I played soccer, joined the swim team, attended all the school dances, and took trips with my friends. On the outside, I was bubbly, positive, and outgoing; but, on the inside, I was hiding this secret and lived with the fear of being judged.
I was diagnosed with cystic fibrosis at the age of 2. As much as it was a part of my everyday life at home, I hated sharing that side of me with friends and schoolmates because I felt like it showed weakness. I did my treatments and took my enzymes when it was convenient. I skipped weekend treatments if that meant being able to travel with friends.
I lied that I was just “getting over a cold” every time I coughed and people around me questioned if I was OK. I downplayed my disease at every opportunity because the most important thing in the world to me at the time was fitting in.
When I was 18 years old, I moved 2,000 miles away from home to attend Trinity University in San Antonio. As a college freshman, I refused to stand out by telling everyone I had a chronic
lung disease. Because doing loud breathing treatments in a shared dorm room on a hall with an open-door policy was anything but discreet, I resorted to barely doing them at all. I didn't want pity or judgment from anyone, especially from people with
a limited understanding of what CF was. Who wants to be known as the sick girl? I managed to finish my freshman school year before CF and my denial finally caught up to me.
During the summer before my sophomore year, I was hospitalized for the first time. I spent over a week in the emergency room and, eventually, the intensive care unit before they could diagnose me with pneumonia. As much as I wanted to believe I was immune
to the progression of CF, I learned the hard way that I wasn't. From then on, PICC lines, IV antibiotics, and chest physical therapy up to five
times a day would simply be my routine for an average of 2-3 times a year -- even when I'm staying on top of my normal, daily treatments.
CF is a part of me, whether I choose to hide it or not, and I realized after my first hospitalization that I was carrying around an unnecessary burden by keeping it a secret.
I had built it up in my head to be this negative cloud that would follow me around, but as I began opening up to more people, it became clear that it really wasn't that big of a deal. I wasn't judged, pitied, or treated any differently for having this
disease. I went from hiding my treatments entirely and avoiding the topic of CF to openly discussing my health and inviting my friends to visit me in the hospital during my weeklong stays.
Yes, sometimes I do have to turn down a trip if I know I won't be able to make time for my medicine. And yes, I've had serious FOMO (fear of missing out) when I'm stuck in a hospital bed attached to an IV pole. However, it's been a small price to pay
for all the other experiences I owe to being in good health -- skydiving in Germany, seeing the Northern Lights in Iceland, and snorkeling in Belize. I am lucky to have gone as long as I did
without a major hospitalization, but it was the wake-up call that I needed to finally own my life, my struggle, my story. I can't get those rebellious years back, but I can do a better job moving forward and that's exactly what I intend to do.
Adult with CF
Lisa was diagnosed with CF when she was 2 years old and got involved with the Cystic Fibrosis Foundation at an early age. Her whole family remains heavily involved, raising money for Amsler’s Army and attending various events throughout the year in both Seattle where she grew up and Phoenix where she lives. Lisa works as an account manager for CVS Health and enjoys all kinds of adventure and travel in her spare time. She graduated with her bachelor’s degree in communications and sociology and her master’s degree in business.
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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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