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.
Although cystic fibrosis sidelined my pursuit of sports, it created space to develop other interests and laid the groundwork for a career in music.
May 18, 2020
How I Found Meaning and Purpose in a Late CF Diagnosis
Trikafta Caused My Anxiety and Depression to Return
I was in elementary school when I found out that I had 30 more years to live. As a child, I couldn't really begin to grasp what that actually meant. My abbreviated life expectancy was never really something I thought or cared about, but it was always something that sat in the back of my mind. As I got older, simple tasks such as playing sports and climbing stairs -- things that I took for granted as a kid -- became more strenuous. It was around this time that I was hospitalized for an unknown lung infection that inevitably forced me to quit my baseball league. This was the first time that cystic fibrosis had taken something from me.
As I explored other passions to pursue, I realized that music was something that had always resonated with me. Between 2009-2010, I discovered electronic music. Inspired by artists such as Skrillex and Deadmau5's music and live shows, I decided to learn how to create electronic music as a hobby. When it came time to start applying to colleges and figuring out my future, I realized that producing music had become a dream that I wanted to materialize into a career.
After high school, I moved to New York City to pursue this newfound dream. Once I started living independently, I faced the challenge of managing my own medicine and allocating time out of my day to do my treatments. This -- in conjunction with the struggle of being a new rising artist -- made me realize the limits of my time. As I continued to work on my career, the threat of my life expectancy that I did not think much about as a child, began to creep up into my thoughts. Anxiety and doubt clouded my mind going into 2019, as my consistent coughing and vomiting made my life unbearable. If I couldn't get out of bed because I felt so terrible, how could I possibly ever go on tour, let alone perform at all?
I always want my music to reflect a part of me -- my experiences or my emotions. Looking back at eight years of pursuing my dream, I've come to realize that my music has been somewhat influenced by the highs and lows of my experience with cystic fibrosis.
Although sometimes when I'm writing, CF isn't at the forefront of my mind, it is always subconsciously there, affecting the music I create whether I fully intend it or not.
Sometimes, though, when I feel like I can't necessarily express in words how I feel, writing music is a therapeutic process for me. In general, I'd say most of my music is more melancholy -- rather than upbeat and happy -- and that doesn't mean I'm always sad, but I just feel -- regardless of my mood at the time of creating a song -- I always create music in that tone.
Today, I have a lot to look forward to, including potential tours and traveling for my music, which have always been things I've dreamed of doing. Thanks to the Cystic Fibrosis Foundation and the introduction of Trikafta®, I have felt better than I ever have. The struggles and anxieties that I had faced in the past have now been alleviated. In the two months that I've been on Trikafta, I've gained over 15 pounds and had a dramatic increase in lung function.
I'm very grateful to the Foundation for the work they've done for me and what they will continue to do. Even though I've had it rough dealing with many hospital stays and at-home IV treatments, I am luckier than most. My hope is that my experience will not be unique and that the Foundation will continue to support and encourage others -- who may not be as fortunate -- to attain their dreams.
Adult with CF
Formerly part of the duo Opvs, Sean has emerged as a solo talent determined to push the boundaries of modern dance music. In his nascent career, Sean has already achieved multiple No. 1s on Hype Machine as well as support from some of the industry's taste-making luminaries. When Martin Garrix, DJ Snake, BENZI, and The Chainsmokers are rinsing your tracks, the future is most assuredly bright. Sean, a New Jersey native who lives in Manhattan, has ignited the stage alongside artists like Snakehips, Getter, DNMO, pluko, and Golden Features, as well as at South by Southwest's Beautiful Buzzz Showcase. You can follow him on social media at @squiredmusic.
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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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