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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
All my life I wanted an answer to why I was so sick. Then I got it, in the form of a CF diagnosis.
August 12, 2016
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During a visit, my ear, nose and throat (ENT) doctor began asking questions unrelated to ear health, including noting that my fingernails were clubbed (rounded), an indicator of lung disease. Then he asked, “Have you ever been tested for cystic fibrosis?”
I grew up wondering why I felt sick every day. Doctors told me that I was tiny for my age but otherwise healthy. I decided that feeling ill was a part of me and was normal.
During college, I was diagnosed with
diabetes, which further confused me. Diabetes explained some symptoms, but not the coughing, shortness of breath or digestion issues.
Trying to find an answer, I started aggressively going to doctors and researching my symptoms to find diseases that matched. As doctors suggested unlikely diseases, such as hormonal disorders, kidney disease, lupus and depression, I felt I was farther from an answer.
By the time I was 22, I felt defeated. My doctors had concluded that I was depressed and making up symptoms. It felt like it was time to give up my desperate search and accept a life with an unknown disease.
Then my ENT suggested CF, a disease I had never heard of. As he described what he knew about CF, it matched all of my symptoms and promised the answer I had been looking for my whole life.
My primary care physician was confident that I did not have CF. “If you had CF, you would not be alive right now,” she said, explaining that kids with CF do not live into their 20s, especially without treatment. I didn't listen to her. I wanted to be tested for CF, which led me to see a pulmonologist. The pulmonologist said the same things and offered an asthma test. I refused, insisting on genetic testing.
The official diagnosis came when my genetic test results showed that I had CF (my
mutation is G551). Although I was scared and confused, I was relieved to have a diagnosis and hopeful about feeling better. All the searching for answers, the helplessness and sickness might finally end.
Discussing a treatment plan with the pulmonologist, I realized that this was not the end at all. I learned that I had a very long road ahead of me of
treatments and lifestyle changes. My pulmonologist told me that with luck, I might live to 30.
My heart sank to my knees every time I thought about it. Living to 30, if I'm lucky. I became depressed and withdrew from friends. I couldn't tell them about CF. I couldn't live their lifestyle, knowing I had CF and a grim future.
I tried to be positive. I had wanted a diagnosis for so long. I should be grateful for an answer. But I wanted to go back to yesterday, before I had CF. I was just me back then, not a CF patient. Who was I now?
Eventually I learned about the CF Foundation and CF care teams.
CF care team seemed to know everything about CF, and explained the history of CF and that the median predicted survival age is almost 40! Imagine how much my life expectancy could increase in the next 10 years with
new research and treatments.
I had a new sense of hope. The care team warned me that yes, I do have a tough road ahead. I will need to be diligent about
doctors' appointments, but they would help me feel better and live longer.
I am now 29, and because of my CF treatments I feel much healthier than I did before. Even though I was diagnosed 6 years ago, I'm still adjusting. There are moments when I think to myself: "What if? What if I was diagnosed younger? What if I had access to these treatments back then? What could my life have been?" There are feelings of anger that come with those questions. During those tougher times I have to take a step back and try to focus on the positives, and remember that we don't know what the future will bring.
Adult with CF
Katie was diagnosed with cystic fibrosis at the age of 22. In 2014, she participated in the CF Foundation's Metro D.C.'s Finest Young Professionals Campaign and received an award for raising the most funds. She was also the keynote speaker at the Finest Finale event and speaks about CF at local fundraisers. In addition to fundraising, she enjoys running, line dancing, drinking coffee and spending time with friends.
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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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