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.
Is being cooped up at home giving you the blues? Welcome to the world of cystic fibrosis patients! We know all too well what it is like to practice social distancing and to shelter in place.
March 27, 2020
A Doctor’s Perspective on CF Care
The Wait For My Son’s Trikafta
In the midst of COVID-19, the general population is getting a front row seat and a firsthand glance at how cystic fibrosis patients feel every day. Cystic fibrosis patients are part of the population who are most at risk during this pandemic because we have an underlying respiratory condition, but although we may be some of the most at risk, we are also some of the most prepared to live in quarantine and isolation.
Isolation: The complete separation from others or a person suffering from contagious or infectious disease (Dictionary.com). Sounds pretty miserable, right?
Isolation is not a term that is so distant to the CF community.
Saying no to plans when people are sick, being extra careful around flu season or sick people, being cautious using public transportation, carrying around mini Purell bottles with us at all times, wearing masks when we travel on airplanes -- these are all aspects of “social distancing” that CF patients have been practicing and employing long before this pandemic (I mean they even made a movie about staying six feet apart).
For all of us in the CF community, we are always trying to raise awareness of what this disease is like and what it feels like to live this way day after day. Now with the rest of the country and the globe jumping on the bandwagon of social distancing and careful community gathering, they may have a small appreciation for what it is like to live with this illness day after day. These are things that CF patients have been doing for years.
We are champion social distancers, and I would stretch as far to say experts on how to stay healthy and careful during this challenging time.
As CF patients, we have lived for days, weeks -- some of us even months -- on end in a single hospital room. Some have spent holidays, birthdays, and anniversaries at home alone, not able to be with the people or in the environments they love the most. This is incredibly difficult, and the rest of the world is experiencing what that is like during COVID-19.
A quote from Desmond Tutu states: “A person is a person through other persons. None of us comes into the world fully formed. We would not know how to think, or walk, or speak, or behave as human beings unless we learned it from other human beings. We need other human beings in order to be human.” A person can only feel truly alive through relationships. We as human beings, CF or not, were not meant to tackle this life alone.
Now more than ever, we must recognize the importance of staying connected, especially in light of COVID-19. Here are some tips on how to get through quarantine, isolation, and difficult times of being alone:
Please stay safe, stay smart, stay connected, and stay home!
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Adult with CF
Leah is a young adult living with cystic fibrosis in Boston. Leah has a bachelor's degree in social work and is working toward her master's degree in higher education. Leah is a certified self-defense instructor and teaches women and girls. From being asked to speak at events for the Foundation to starting her own Great Strides walk team, Leah serves the CF Foundation and CF community as much as she can. You can email Leah at email@example.com if you have questions or would like to connect with her.
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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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