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.
High school is hard enough on its own, but throw cystic fibrosis into the mix and it gets a million times harder.
December 19, 2016
Asking for the Gift of Time
The (Birthday) Gift of Life: My Brother’s Liver Transplants
I went to public
school up until the eighth grade when I switched to a private high school. On the very first day of my new school, I immediately knew that there was no way I would be able to balance everything that I wanted to do there along with my health. So, I began skipping more and more
treatments to make time for school, friends and sports. Two weeks into my freshman year, I was hospitalized. I can easily say it was the worst Labor Day weekend ever.
The worst part of this hospitalization, however, was the timing. The first month or so of school is when everybody starts to really bond and form their friend groups. I was making friends before my hospitalization, but when I came back two weeks later almost none of those people still talked to me. I had to make all new friends, which I am almost thankful for because I now have the best friends ever and I know they will never leave my side.
After I was hospitalized, I knew that something had to change. Instead of playing many different sports as I had done my whole life, I decided that basketball was the one I really wanted to focus on. But even though I cut back, the fact that I had to wake up much earlier than my other classmates because of my CF only made it harder to attend practice every day, do all my treatments and finish my homework without being completely exhausted. Then, in November of my freshman year, I got a port and could no longer play basketball because it had to stay accessed for my daily antibiotics.
This is when things really started to suck. I couldn't do anything I wanted to anymore. I couldn't play sports; I had two IVs every night so I couldn't really stay out with my friends, and if I was going to stay home, there was no way I was going to do my treatments. I kept doing my IVs and oral medications, but nebulizers and chest physical therapy were totally out of the question.
My parents bugged me constantly about doing treatments, and the more they bugged me, the less likely I was to do a treatment. There were just so many things I would rather be doing. This behavior ultimately resulted in me getting sicker and sicker with more appointments and more hospitalizations, giving me less time to spend at school or doing the activities I enjoyed. School was getting harder and harder, and I have no idea how I kept up my good grades because I missed so much school. I never felt good and was always in a bad mood.
This is around the time when my
care team started to step in more than they already had. One of the things that my care team talks about quite often is the quality of life you have. I have a great relationship with my team and feel comfortable talking with them about how I feel, which -- I think -- is one of the most important things for a person with CF, no matter how young you are. After
talking through the challenges I was facing, my CF doctor and I came up with a treatment plan that would work for me. In the end, we were able to negotiate a deal so that I was doing more treatments than I had been before, but I wasn't just sitting at home hooked up to machines.
I learned that it's important not to focus so much on your health and treatments that it feels like you aren't even living your life anymore. However, it's also important to stay healthy so you can live your life the way you want to live it.
I am now a junior in high school and while I'm definitely not the best about doing my treatments, I do them more frequently than I did when I started high school. I am so grateful to have a care team that is willing to work with me and figure out what works best for me.
Young adult with CF
Betsy was diagnosed with CF when she was 1 and a half years old. She lives in South Texas with her two sisters and her parents, along with their dog and three cats. Betsy has always been active in sports to help her stay healthy. Despite her CF, Betsy attends school just like anyone else and is looking forward to graduating high school and then heading off to college. Betsy spoke at the 2016 Cystic Fibrosis Gala for the CF regional chapter in her area, and has been invited to attend multiple medical conferences for rare genetic disorders. You can find Betsy on Instagram @betsysulli.
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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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