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.
In third grade, I was granted the most amazing wish -- to go to Disney World! Through Make-a-Wish, I was able to have the time of my life with my family and put aside the everyday stresses that having cystic fibrosis brings. All these years later, my family still cherishes this time.
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Childhood is the time when you are supposed to have fun without worry, but terminal illnesses such as cystic fibrosis can rob any parent and child of that special opportunity.
As a child with cystic fibrosis, I was always aware of certain things that other children had no need to acknowledge. Constantly washing my hands, keeping a distance from children coughing or sneezing, taking enzymes before eating, needing sleepovers to be planned in advance so I could do my nightly treatment -- sometimes the fun of childhood was taken away.
Like many parents of children with CF probably are, my parents have always tended to be “helicopter parents.” In fact, they were so protective that my mother was a substitute teacher at my elementary school while my dad worked (and still does) every day, all day, to ensure that I would have a positive future.
I was in the third grade when my parents learned about the Make-A-Wish Foundation. Make-A-Wish is a nonprofit organization that grants wishes to terminally ill children. As all children probably dream of, my wish was to vacation in the happiest place in the world: Disney World! I remember the process began with two Make-A-Wish employees coming to my home to ask me where I would want to go if I could go anywhere and what I would want to do. They were the kindest people who made me feel so special. They wanted to get to know me and find out how they could bring me happiness.
Although I was unaware of it at the time, apparently there was another local school raising money for my wish trip while I went about my daily life. My parents checked me out of school one day, which I knew was out of the ordinary since my dad always worked and I wasn't scheduled for a doctor's appointment. We pulled up to the other school as my confusion grew, and entered the cafeteria. As I walked in, I saw all the students and teachers filled with excitement as they brought me to the stage. I felt like a complete rock star as they granted my wish and supplied me with goodies they thought would come in handy on my trip.
Not only was I excited, but I could also see the happiness in my parents' eyes. My parents work so hard every day to ensure that my life is of the best quality, so seeing other people care enough about me to raise money for my wish trip was an experience they will always be thankful for.
Then, it was the day we left for Orlando. I remember the excitement running through me as we approached the airport. I knew this would be a special trip and I wanted to remember every second of it. I had my autograph book for all the characters to sign in my hand ready to go. (I first had my parents write in my book, along with the two Make-A-Wish employees.)
As soon as our plane landed, I was treated like a complete princess. Our room was at the top floor of the hotel. We had such a beautiful view and were even given warm cookies and milk every night. I was in absolute heaven. From face painting on the boardwalk to fireworks every night, my parents and I had a carefree vacation filled with so many memories we all cherish. We attended all the parks, with the added perk of skipping the lines and enjoying the rides as many times as I wanted. I was finally able to spend quality time with my mom and dad without them stressing over work or my health. We all were able to relax and enjoy the magic of Disney World together as a family.
Make-A-Wish will always hold a special place in my heart for giving me and my family the trip of my dreams. Though cystic fibrosis is often scary and the future is unknown, my wish trip made me feel like the most loved person, surrounded by people who cared for me.
Walt Disney said, “You can design and create, and build the most wonderful place in the world. But it takes people to make the dream a reality.” Make-A-Wish definitely made me feel special and brought me an exciting week with no worries and all the fun every child should experience. I will always be thankful for my experience and hope that other children with cystic fibrosis are able to have an experience like mine.
Young adult with CF
Ana is a second-year student at the Mississippi College School of Law. Ana’s passion is family law since she loves to help others through difficult times. In her free time, she enjoys wakeboarding and spending time with her puppy, Conley. Ana tries to take advantage of her CF, which has helped her gain the organizational skills to balance medications and treatments and stay dedicated to ensuring a successful future.
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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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