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 hadn't realized the extent to which having cystic fibrosis helped shape me as a social worker, until I opened up to my coworkers about my disease. Through those conversations, I have come to understand that isolation causes many people with CF to struggle and that connection to others and a support system are key to coping with this disease.
Katie Kirby, MSW
July 21, 2020
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Since high school, I have wanted to work in mental health. One of the questions that drove me to this field was wondering how I was able to stay mentally healthy, while I saw so many other people with cystic fibrosis struggling with depression and anxiety. My clinical work has helped me answer that question, and conversations with my coworkers have also helped me have a deeper understanding of my experience with CF.
When a supervisor first asked me how my experience with CF helped to shape me as a clinician, I naively thought it didn't.
I thought CF motivated me to enter this field, but not much more. About a year later, as I heard my director talk about how his lived experiences affected how he approached therapy, a light bulb went on for me. My work is grounded in relational cultural theory, a theoretical orientation that emphasizes the essential need for connection and participation in growth-fostering relationships. This theory supports the belief that isolation is one of the biggest sources of suffering for individuals. In that moment, I could see what a central role CF played in my understanding of why people struggle.
As a kid and teenager, I didn't know another person with CF, but my family and friends helped me never feel alone. My parents and siblings not only talked about CF and kept me company as I did my treatments, but also taught me the skills to build deep, meaningful relationships and be able to talk to others about CF. When I think about what has kept me mentally healthy while navigating the challenges of CF, I credit these relationships. These connections give my life meaning and keep me grounded, especially when facing all the uncertainty of what life with CF can look like. These experiences have led me to believe that some of the most important things I can offer my clients is a space to be accepted exactly as they are and to have someone help them process their experiences with empathy and compassion.
Not only do relationships help us feel connected and bolster our mental health by reducing feelings of isolation, they also lead to a deeper understanding of our own experiences. I was initially very hesitant to talk about CF with coworkers. I told my supervisor but otherwise didn't really share that part of my life until I had been working there for several months and was starting Trikafta®. I am so grateful that I took that risk because it has allowed me to have a deeper understanding of my experience with CF.
Our staff often talk about the importance of culture and the privileges and opportunities that come with different identities. My director shared his experience of grieving whiteness and not having access to the opportunities that come with white skin. That comment resonated deeply with me and helped me reframe my thoughts and feelings before my wedding in 2019. In the months leading up to getting married, I worried about what the future might hold in terms of my health and the impact that might have on my husband and our marriage. No one is guaranteed a tomorrow, and yet, most people assume they will live a long and healthy life. Although I have all the hope in the world that I will live a very long and healthy life, I also don't assume that, and getting married caused me to confront that in a whole new way. I needed to grieve not having the opportunity to assume lifelong health, especially while planning for a future with my husband. Seeing it as grief helped me better understand why processing those fears through talking and crying with my husband was what I needed. By letting myself do these things with my husband, we were able to find a way through.
Grief is often difficult to sit with and talk about because others so often want to help us just feel better, but really there is no fixing grief; there is only acknowledging and sitting with that sadness, while also finding those who will support you through it.
I think for people with chronic illnesses it can feel like there is pressure to always remain positive, but I think it is just as important to honor the sadness and grief that can come with living with CF.
I believe that connection with others and allowing others to help you move through the difficult emotions and grief that can come with living with CF are key to remaining mentally healthy.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Katie Kirby, MSW
Adult with CF
Katie is passionate about cooking, reading, traveling, and mental health. A graduate of the Brown School at Washington University in St. Louis, Katie is a licensed social worker who works in college mental health. Katie is part of CF Community Voice, CF Peer Connect, and the Adult Advisory Council for the Cystic Fibrosis Foundation. Katie lives with her husband, Tyler, and their two puppy sons, Talula and Talubb, in St. Louis.
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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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