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.
When I was diagnosed with CF at 22, I was relieved. I could start treating the disease we'd been trying to identify for years. But after the initial excitement, I started facing issues of denial, anger and confusion…so I ran.
September 18, 2015
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For me, one of the hardest things about having CF is experiencing feelings of loneliness and isolation. I know that I'm not like other people. I wake up every day feeling sick and fatigued. Like others with CF, I deal with treatments and pills on a daily basis. But I'm not like many people with CF either. I was
diagnosed when I was 22 and I'm still trying to figure out what it means to have this disease. Sometimes I feel like there is really no one else like me and that leaves me feeling scared and lonely.
Beginning at a young age, I always felt different from everyone else. I remember in 6th grade the gym teacher asked us to run a mile around the track with a goal to complete it in 10 minutes or less. As the other kids bolted off, I struggled. I didn't make it half way around the track before I passed out and the teacher had to carry me to the nurse's office. As she carried me away, the other kids were cheering because I had gotten them out of gym class for the day. I
told myself I’m not meant to be a runner or an athlete, so who cares if I
couldn’t run a mile?
When I was diagnosed with CF after not knowing what was wrong with me for so long, I felt a huge sense of relief. I was able to start treatments and my energy level drastically improved. However, my vision of being a “normal” person was slipping away. Now I was someone with this label: the girl with a terminal, chronic illness who can't do a lot of things because of CF.
After the initial relief of being diagnosed, I started facing issues of denial and confusion.
I dealt with these feelings by hiding them and pretending CF didn't exist. But I also decided I would exercise more -- starting off by doing walk/run intervals
around the track. Maybe I could finally complete that mile that I dreaded in
gym class. Then last year, I somehow became spontaneous enough to walk into a
running store and join a running group.
The first run I went on was intimidating. About 30 of us gathered while the run leader said, “Today's route is an easy three-mile run.” My first thought was, “Easy?! You are crazy.” I don't know how long it took me to finish, but I finished it. As I reached the end of the route, the group was waiting for me and cheering me on. I knew in that moment that I had just found an incredible group of supportive friends.
I kept going back to the run group and I turned those 3 miles into 4 miles, and 4 into 6 and kept going until I ran my first half marathon. I don't know why I tortured myself this way -- all I wanted to do was run a mile around the track! Because
of running, my health has improved. I’ve become more disciplined about eating
right and doing treatments. If I can get myself through each painful step of a
half marathon, I can get through each breath of a treatment. If I stopped
running, it would be like I stopped taking a crucial medicine for my CF.
Running has made me feel less isolated from everyone else. Everyone
has challenges that have shaped them, and CF is one of mine. Even though I’m
not “normal,” I’ve learned to embrace it and appreciate the strong person that
CF has made me. Running showed me that my fear of being labeled as someone who
can’t do anything is false. CF is not a negative label or an inhibitor; it’s
just a part of me.
I am now signed up for the Marine Corps Marathon, with a new goal of completing
a full marathon. And who knows -- running the race may only be the beginning of
many attempts to complete a full marathon. One thing I’ve learned from this
process is: don’t let anyone tell you that you can’t do something. Especially
Adult with CF
Katie was diagnosed with cystic fibrosis at the age of 22. In 2014, she participated in the CF Foundation's Metro D.C.'s Finest Young Professionals Campaign and received an award for raising the most funds. She was also the keynote speaker at the Finest Finale event and speaks about CF at local fundraisers. In addition to fundraising, she enjoys running, line dancing, drinking coffee and spending time with friends.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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