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.
The expression, “It takes a village,” sometimes seems to apply to my clinic visits. I like having my family accompany me. They support me emotionally and help me keep track of important health information.
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Clinic visits are long and usually an overload of information. When we were kids, my brother, sister, and I had our clinic visits on the same day at the same time, and our mom was the only adult there to take everything in and then update our family on how things went. I sort of knew it was a lot for her at the time, but now I realize that it was truly overwhelming. Sometimes, especially when the news at clinic isn't good, it's really hard to remember everything that was said; so as an adult with cystic fibrosis, I always have someone with me at clinic -- either my husband or my mom.
I really can't imagine going to clinic alone. Our CF care team members have become our friends over the years, considering that we've essentially seen the same team at least four times a year for 12 years, plus frequent phone calls and emails, hospitalizations, and even my brother Mason's two liver transplants. Even though I am really comfortable with my team, and I know they have my best interests in mind, it's still important to have someone else there with me to ask questions, clarify things when necessary, and to be there as a second set of ears.
Mason and I go to Nebraska Med for clinic, which means traveling more than three hours every three months for visits. Because his health care became a bit more complicated since his liver transplant in 2016, I have been accompanying him and my mom to his CF and transplant clinic visits in addition to traveling to Omaha for my own appointments.
Honestly, I look forward to our trips. Even though it's not for anything “fun,” the travel time is really good quality time with my mom and brother, neither of whom I get to see very often since we live a few hours away from each other. I know my mom feels more supported having another adult there, and there have been a few times that my brother's visits haven't gone as expected. In these cases, I think having three of us present makes all of us feel like things are going to be OK. There's just something about having support that makes things seem less daunting and scary.
My husband goes with me to my clinic visits, and my mom has stepped in the few times that he couldn't make it. Kory has been right by my side at clinic and during hospital stays since we started dating over five years ago. He had been present long before he “had” to be. For us, it's just a no-brainer that he comes to my clinic visits. Kory has a busy work schedule, but he always makes time for my appointments because he just wouldn't have it any other way.
Having Kory there makes my visits so much more enjoyable and even light-hearted. I have a pretty decent gallery on my phone of photos and videos taken during clinic visits -- sneak-attacks of him with funny Snapchat filters while we're waiting in the exam room and videos of him trying out pulmonary function tests (with his FEV1 well over 100 percent ... show-off), to name a few.
Having someone with me at clinic matters for the informational side of things, but also, and maybe more importantly, for the emotional and mental side of things. I have definitely felt anxious going to clinic, but having my husband or mom (and sometimes my brother) there definitely makes me more comfortable and even makes the day enjoyable.
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Adult with CF
Morgan lives with her husband, Kory, and twin babies, Alder and Winslow, in rural northeast Kansas where she enjoys gardening and chicken-keeping. She has many interests and is always entertaining her curiosity, but her mainstays are spending time outside,
reading, writing, photography, and cultivating a relationship with plants. She grew up with two younger siblings, Allison and Mason, who also live with CF. You can follow her on Instagram. P.S.
Beets, Bears, Battlestar Galactica.
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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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