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.
My atypical cystic fibrosis led doctors to believe that my health issues had another cause. Members of the CF community welcomed me as one of their own and helped me to find the answer.
May 23, 2017
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My journey with cystic fibrosis has been difficult, to say the least. CF was first brought into the conversation when I was 16 years old at Children's Memorial Hospital here in Chicago. I underwent
genetic tests that showed only one mutation, and the results of a
sweat test came back negative.
My parents and I moved on, thinking maybe I just had really bad asthma and that my inability to gain weight was because I had a fast metabolism. Over the next few months, however, I got really sick and ultimately had to drop out of high school. Although being home was safer for me because I was away from
germs that could further harm me, I still didn't have an answer as to why I was in this condition. I was sick of not getting the information I needed and began to see other pulmonologists to find out what was wrong. Each would mention CF, but would never fully diagnose me because I had only one mutation.
I was torn because even though I knew from my research that CF was the answer, I did not fully fit the mold of CF. But, I knew that I fit a mold; I just needed to find it. While visiting the Cystic Fibrosis Foundation's website, I found
BreatheCon, a virtual conference organized by people with CF for people with CF. There, I met so many others like me! I met people with one mutation and the same symptoms I had -- and they were thriving! I got so much great advice, and soon, with their help and encouragement, I got in contact with a wonderful CF
care center, where I was diagnosed with atypical CF* and bronchiectasis and learned that I had
Pseudomonas. I have been there ever since!
I now have a whole team dedicated to keeping me healthy and alive -- people who care about my life. I went from not having the right treatment to having all the right treatments. I have my
vest, I have my
antibiotics, I have my treatments; it has helped everything fall into place.
My lung function has gone from the mid-40s to 66 percent. I can feel the difference in my breathing, and I will continue to raise my numbers. I gained four pounds, going from 98 pounds to 102 pounds; I had never been in the triple digits before. I cried on the scale because to me, this small weight gain meant progress. I am
exercising and I am so grateful to have a care routine to follow that I happily take my medications and therapy, because I was never able to before.
I thank God for the
CF community because without their embrace, advice, and friendship, I would not be where I am now. The CF Foundation also connected me with a mentor who has CF, and she's someone I can talk to and who understands when I am having a bad day.
My stubbornness and willingness to continue to fight for answers led me to find out I have atypical cystic fibrosis and bronchiectasis. I finally have a name for what was causing me so many issues growing up. And now, thanks to the CF community, I can breathe a sigh of relief.
*Editorial Note: Although "Atypical CF" is referenced, the term has no clinical significance because there is no standard definition for it.
Adult with CF
Marieliz has atypical cystic fibrosis and bronchiectasis. She is a member of the patient advisory council at Presence St. Mary and Elizabeth Medical Center in Chicago, where she ensures patients receive top care and attention from medical staff. Marieliz joined the Cystic Fibrosis Foundation’s Adult Advisory Council in May 2018 and enjoys getting involved in the Foundation’s other projects as well. She currently lives in Chicago with her husband, Michael, and they share a 4-year-old adopted cat named Penelope Marie.
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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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