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.
While you are grinding through a seemingly never-ending cycle of cystic fibrosis treatments, it also can be helpful to engage in self-care activities that bring you happiness. This nurturing routine can help you keep perspective and remind you of why you are undergoing all these treatments in the first place.
March 16, 2021
How I Found My Way Back to Regular Exercise
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If 2020 taught me anything, it was that simply taking care of myself is not enough; I need self-care. To clarify, I see taking care of myself as health management; this includes treatments, medications,
tune-ups, regular appointments with a mental health professional, and generous communication with my care team. Self-care, however, is an intentional
catering to myself in ways that make me happy -- or give me a break -- when I'm beginning to feel overwhelmed.
Last year, I was admitted into the hospital almost every six weeks. This may seem like an odd confession, but -- during that time -- I struggled to answer any questions about myself or things I liked to do outside of the hospital; I realized I had been
devoting all my time outside of schoolwork to taking care of myself. This lack of “me-time” and self-development took a huge toll on my mental health.
I often asked myself who was I becoming, and if I had let myself be so submerged in medical routines that I forgot the actual reasons why I was fighting so hard on a day-to-day basis.
Honestly, I had lost a little perspective, but I was determined to fix that. Getting myself out of that funk was difficult. In no way was this an overnight transformation into me being the most self-aware, content human being; but I had to remind myself
of small things I could be doing that would lead me down that path.
After a lot of self-reflection, I found that music, journaling, planned time for good shows/movies, doing my nails, long sunset-capturing drives, any time spent with animals, and coffee are my self-care go-tos. Although the frequent admissions did not
stop, I learned to incorporate self-care into my daily hospital routine. And -- might I say -- jam sessions in the shower during tune-ups are so rejuvenating!
Slowly but surely, I was able to perform self-care without an ounce of worry or guilt because I realized that this me-time was granting me perspective.
By doing the small things I could control, I was realizing and accepting my new normal and gaining a different outlook on who I was holistically; my mental health has become so much better because of it.
I would now argue that self-care is an under-discussed aspect of staying healthy.
Each individual with CF is unique, so I suspect all our manifestations of self-care will look different as well. If you haven't decided on your outlets -- or find yourself in the same boat that I was in last year -- ask yourself these questions:
If you still cannot decide what activity you find suitable for your own individual self-care, start by taking someone else's suggestion and see how it fits you. The main point is that you do these activities for yourself, with no guilt. In the same way,
I know when the world constantly throws adversity and sudden change in our faces, taking care of ourselves is all we can do on some days; treatments and pill regimens are not the types of things that can easily bring joy or remind us of ourselves
outside of everything that comes with cystic fibrosis.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Angel studies communications and Spanish at the University of Missouri Columbia. Over the years Angel has called many CF centers home including Children’s Mercy Hospital, Blank Children’s Hospital, and The University of Kansas (KU) Medical Center. Angel
has been a co-speaker for the CF Foundation speaker series with her brother, Paul, and serves on KU’s CF Adult Advisory Board. She enjoys cooking with no audience and spontaneous singing. Follow her on Instagram.
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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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