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 don't make many plans anymore, because having cystic fibrosis means I never know how I'll feel from one day to the next or what I'll be capable of doing physically.
November 8, 2019
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I can plan to go out to dinner, out to the movies, or even visit a friend, but there are no guarantees that CF will let me follow through. With CF, I can look like my normal self on one day and then not recognize the face I see looking back at me in the mirror the next. Over the years, invitations from friends have slowly dwindled until I rarely get calls to go out. It's gotten to the point where I do not plan anything anymore.
If I do go out, it's a long process with tons of questions. I have to think about so many things that others without CF don't. How many people are going? Is it indoors or outdoors? Any smokers? Will anyone be sick? Can I make this walk even though my lungs hurt? How many stairs? The list goes on and on.
I can watch life pass me by and stare out the window. I'm safe at home, however, it's sterile and I'm not doing much here. But, that's CF. It's isolating and it's unpredictable. When I do go out, I make sure that I can handle it because going out is exhausting. My lungs aren't what they used to be and I have to be conscious of that. CF can range from days where I can go anywhere and enjoy the wind against my face to days where I can't move because my arthritis has decided to become too agonizing to let me walk and my lungs burn and ache. Simply going outdoors is not always in the cards.
I miss going out the ways I used to, but I plan differently now. If I am invited anywhere, I never say “Yes, I'll be there,” I say, “If I feel good, I'll try my best to make it.” Life doesn't stop; it just gets a little slower for me because I cannot function at the rate anyone else around me does. My body has slowed down. It's at its own level of functionality and I accept that.
I live being grateful that I'm still here and I am thankful for what I have because tomorrow is never guaranteed. I can't make plans to do this or that like others can, but I can do things spontaneously on the days that I feel good. I can enjoy the day because I know in the back of my mind that I may feel badly the next day or even have an episode that will knock me off my feet while I'm out. I live one day at a time, the best way that I can, because that's all I can do right now. If my sinuses clear up, and I can go outside, and no one is smoking nearby, I'll smell some flowers close to my house or enjoy some fresh air while sitting on my balcony watching life go by. I'll be perfectly content, too, because the day before it may have been too painful to walk outside.
CF is unpredictable. It affects each CFer differently. Some can do things that others can't, but we all have one thing in common: One day, we will see a different face in the mirror looking back at us. It's a face we recognize. It's CF reminding us that it's there and it's not going anywhere.
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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