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.
Running amidst the beauty of the Kansas countryside helps improve my lung function and mood and has even kindled a passion inside me for the environment.
November 22, 2019
Facing and Embracing CFRD
What Does “Better” Mean on Trikafta?
“It is vitally important to human health and well-being to be able to spend time in natural spaces such as parks, gardens, beaches, and forests.” -- David R. Boyd, “The Optimistic Environmentalist”
My cystic fibrosis doctor, like most today, highly encourages exercise as part of my overall care plan. Following a health scare in 2014 when my FEV1 suddenly dropped by 30 percent, I got serious about making running a habit to help improve my lung health. Little did I know, that lifestyle change would lead to numerous health benefits and the development of a lifelong passion.
I primarily run outside in a natural setting among pastures and prairies without the distraction of people, cars, or buildings. There's so much beauty around me that I often have to stop -- mid-run -- to take it all in. Running isn't only about exercise as an airway clearance technique (ACT) for me; it's about crouching down to get a good look at a wildflower growing along the road, petting a horse in a pasture, letting my running buddy, Copper, wade around in a creek, or watching a butterfly float above me.
Noticing these little wonders led to more of an appreciation for nature, as well as gratitude for being able to run and getting to do it outside. I look forward to running outside for the quality time I get with the sun, wind, flowers, grasses, and critters. That might sound silly to you, but it is scientifically proven that spending time in nature is good for our mental, emotional, and physical well-being; it can lower blood pressure, improve blood glucose, lift depression, boost the immune system, and increase concentration and memory, among other things. As a person living with CF, those are all things I could use some help with! I first read about these benefits in a book called, “Forest Bathing,” by Dr. Qing Li, MD, PhD. And, I've actually experienced these benefits myself while running in the countryside.
I feel calmer, happier, and more at ease when I'm running outside, especially when I hear birds instead of traffic, and my view is of rolling green hills instead of cityscapes. Spending time in nature is helping me with my mental and physical health -- borrowing some concepts from yoga -- such as taking deep breaths or taking a moment to contemplate a tree -- have helped me to center myself and bring me back to the present when I'm feeling anxious. And as for my physical health, I am 27 and my lung function has steadily increased in recent years. I definitely credit some of that success to running outside.
As my connection to nature has grown, I have become curious about the plants, animals, and insects that I see. I often will spot a new plant or critter, get up close and personal, make a mental note about its features, and look it up when I get home. It's through this process that I have learned a lot about Kansas plants and animals, making them that much more precious to me. It has also made me want to know more about the threats to our environment today, of which there are plenty.
I started educating myself about environmental issues so that I could be informed, reduce my impact on the environment, and take action. I read books about environmental issues, I advocate for environmental protection, and I get involved however I can. I volunteer with organizations such as The Nature Conservancy to help protect our land and water, and I'm even working with the Kansas Department of Wildlife to restore a few of acres of our property back to native prairie to replace some of our lost ecosystem. As I continue to learn, I experience a good deal of anxiety about our deteriorating environment and natural places, but taking action empowers me by being part of the solution, and spending time outside helps to alleviate that anxiety.
In an unexpected way, having CF has led to my relationship with nature and my desire to protect it. If it weren't for my need for airway clearance, I probably wouldn't have stuck with running, and I wouldn't have spent so much time outside. Cystic fibrosis can be stressful, and anxiety and depression often result. But nature connects us to the bigger picture. For me, being reminded that I am just a very tiny being on a big planet within an even bigger universe, helps to calm my mind. This mindset helps me fight for a healthy planet and reduces my anxiety when I'm experiencing health issues related to CF.
Taking care of my health and advocating for nature are at the top of my priority list, and in a very real way they go hand in hand -- people can't exist without nature, so it's vital that we care for our environment, as well as our personal health. Whether it's running outside or simply spending time in a hospital garden, any intentional exposure to nature can help improve our mental, emotional, and physical well-being.
More people spending time outside means more people learning to care about the environment and fighting to protect it, which we need now more than ever in a time where climate change, species and habitat loss, plasticization of our oceans, pollution of our air and water, and overpopulation pose serious risks to the survival of life on earth. So go hug a tree, thank it for the oxygen it provides you, and see how your perception changes.
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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