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.
Despite letting negative thoughts get to me when I was younger, I learned to make the most of any situation. This positive mindset has helped me succeed in college, and I want to help pass along what I have learned.
April 27, 2021
What Three Transplants Has Taught Me
Making In-Person Care Center Visits a Priority Despite the Pandemic
I'm a 21-year-old living with cystic fibrosis, and I am a junior at High Point University in North Carolina, where I am studying entrepreneurship. Over this past year, I have been reflecting on my mindset living with cystic fibrosis. I'm blown away that
my motivation has actually increased during this time. Before this past year I had adopted a negative mindset, resulting in a negative life. Let me explain.
I was diagnosed with CF when I was 5 months old and was the first child to be diagnosed in that hospital. Growing up with CF is all I've ever known; and it has come with many difficulties. As my classmates were moving onto the next grade, I was drowning
in work and dealing with an illness. As a result, I was held back in first grade. Not only did it hurt my self-esteem, but it hurt my relationships and ability to make friends. Even though I was young, I learned early on what it was like to be left
I had surgery when I was 8 years old to have a feeding tube put into my stomach. I started to get very down on myself from the months of being
in the hospital year after year, which led to a lot of negative thoughts. I was not as athletic as the others, did not attend playdates, and did not participate in a lot of activities that many kids my age were doing. I was very self-conscious about
my body, took a lot of different medications, and had to do countless treatments during my school days.
Despite these negative aspects, I have always found a way to smile every day even if I was struggling extra hard.
I think a lot of other people with CF might agree that most, if not all, of our anxiety and depression come from the feeling of not being as equal to others.
We go through so much more at a young age than many other people have to go through.
Yes, this does take a toll, but you have to turn a negative situation into a positive situation. When you're in the hospital or are very sick and start developing negative thoughts, why don't you find ways to better yourself for the future? The two things
I wish I told myself at an earlier age while I was in the hospital: read motivational and self-development books and watch educational videos on YouTube to learn skills that interest you (real estate, photography/videography, starting your own business,
investing). But this is the main idea I want to preach about: We are not anything less than normal human beings; we are much greater -- we are superheroes!
I want to talk about some of my awesome experiences to show other people with CF that anything is possible. Because I was in the hospital so much, I was not able to be as athletic as my friends; but no matter how little I could practice my favorite
sports, I still had the best experience I could have. For example, I was able to throw out the first pitch at the huge Little League tournament that takes place at Dreams Park in Cooperstown, N.Y. Also, in my Little League years, I made an all-star
team and received an award from a foundation for always keeping a smile on my face no matter what I had been through. In my high school years, I was able to compete as a three-sport athlete in- baseball, basketball, and golf. Last, but not least,
I was able to attend college and to this day be very successful in all aspects of my life.
The piece of advice I would give to my fellow CFers would be to have a schedule and define what you want to get done in 30-minute-1-hour time blocks. Also, figure out what time of the day you like to do your more challenging work, and when you want to
do your easy work. This will help you go through every day feeling like you have completed everything you want to. With this schedule, you want to wake up at a reasonable time every day. You want to make sure you get eight hours of sleep every night,
so figure out what works best for you -- whether it's 11 p.m.-7 a.m. or 12 a.m.-8 a.m. Yes, you might have to give up some things to get a solid eight hours of sleep, but trust me, it will show massive results toward your goals if you get eight hours.
You will feel sharper in the morning, more awake, more motivated, and especially more clear in your mindset.
The last point I want to preach to other people with CF is: No matter what we have dealt with, keep your head up high, turn the situation from being negative to a positive, and believe in yourself.
We are superheroes no matter what others say, and no one is stopping us from our goals and dreams. If you have a dream in your life, no matter how unrealistic it may be, don't stop dreaming and take action. I can't wait to see all my fellow CFers become
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Dugan is a student at High Point University in North Carolina. He is passionate about helping other people with cystic fibrosis. Dugan recently started a program that helps people with cystic fibrosis design their dream reality, become the pro version
of themselves, and be able to achieve every one of their goals, starting today. You can follow his podcast on Spotify, follow him on Instagram, or schedule a free call to talk with him about anything
Share this Post
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.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails