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.
My school gave students a choice of how they want to go back to school: virtually or in person. After considering what made sense for my CF, learning style, and mental health, I decided to attend school in person.
September 23, 2020
Despite the Detours, I Live a Full Life With CF
Becoming a Dad After Receiving a Lung Transplant
For the 2020-2021 school year, my school district debated how to hold classes. They decided to give students the choice of whether to do virtual or in-person learning. Having cystic fibrosis complicated making my decision but I decided to choose to go
to school in person. Here's why:
Virtual learning was not for me
After my school closed when COVID-19 started, the school district came out with a virtual learning plan that was optional for
The first week of virtual learning, I decided to try it out. However, I quickly learned that learning virtually didn't work for me. It was very hard for me to focus and complete any work.
Since virtual learning was optional, I decided to stop doing it. But this year, if I decided to do virtual learning, I'd be required to do all of my school work and it would be graded. I don't want learning online to affect my grades and mental health.
I want to enjoy my high school experience
I still want to enjoy high school, despite being in a pandemic. Since I am just starting my sophomore year, I don't want to miss out on the high school experience, if I can avoid it. I want to see my friends again, since I haven't seen them since school
closed in March. It's been really hard not seeing them for so many months, and it has affected my mental health. The social aspect of the high school experience is one I don't want to miss.
It's important for me to enjoy my time in high school as much as possible since my life expectancy is about 40 years old. With that in the back of my mind, I don't want to experience part of my high school experience virtually.
I miss being in band class
Band is my favorite class -- I love it so much. I'm also a member of the marching band and I want to get back into marching and playing music. Music is so important to me. Being able to play the clarinet in the band with my friends was one of the parts
of freshman year I enjoyed so much. Since my school's marching band is relatively small, I feel like I need to be there for my section and my band.
My school is taking precautions
My school district recently decided to require masks for all students, teachers, and staff. This mandate made me feel more relieved about going back to school. The school district is also providing schools with extra cleaning supplies.
Because of my CF, I was hesitant about going back to school, however, I was able to work with my care team to make sure that it was safe for me. My care team helped me weigh my options and gave me the information I needed to make the best decision.
My parents and I also discussed the pros and cons and decided that in-person school would be the best option for me. By knowing the risks about going back to school and about the multiple precautions my school is taking, I feel much better about attending
school in person this year.
Attending a public high school has definitely been a challenge during the COVID-19 pandemic. However, I think for me it is a more effective way to learn. It was not an easy decision for me to make, given I am more at risk for getting a severe case of
COVID-19. Therefore, I will continue to wear my mask and sanitize often.
Having CF has always been a struggle, but it has also made me stronger and I am up for the challenge of going back to school in person. I recently started the school year and it has taken some getting used to. I have to wear my mask constantly and sanitize
often. I don't regret my decision to go to school in person, as it has so far been easier than virtual learning. I have also been given lots of homework, so I have been more stressed. However, I am so thankful that in-person school is going so well
Interested in sharing your story? The CF Community Blog wants to hear from you.
Young adult with CF
Caroline was diagnosed with cystic fibrosis at 4 months old. She lives in Nashville with her parents. She plays clarinet in her school’s marching band and also plays guitar. Caroline has participated in several Great Strides walks and fundraisers. She
has also worked with her CF care team at Vanderbilt Children’s Hospital for multiple drug trials with the Foundation. Follow her Instagram.
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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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