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.
Here's a snapshot of six works we're spotlighting from members of the CF community. Whether they shared their story through writing or through song, their work has been shaped by their experiences of living with CF.
June 1, 2021
My Sobriety Journey
How I’m Preparing for Trikafta’s Expected Approval for Children Ages 6-11
Author, “Just Breathe”
Death was the last thing on my mind when I woke up on the morning of August 6, 2013. I had just started an exciting new opportunity at one of the world's biggest corporations;
was newly married to a beautiful wife I was deeply in love with; and was excitedly planning for the upcoming birth of my first child.
But when I walked into my doctor's office for what I thought would be a simple medication adjustment because of asthma-related complications, I was shocked when the doctor said, "You have six months to live unless you get a lung transplant."
What followed was a harrowing medical and personal journey after learning that my asthma was actually cystic fibrosis. “Just Breathe” takes you on my odyssey from the start of that shattering diagnosis through visiting medical facilities, becoming a father,
and fighting to live during the collapse of my marriage.
Today, I'm focused on being the best father I can be for my daughter, writing about life with CF, and raising awareness of the CF community. “Just Breathe” is a memoir about how to get up when life kicks you down.
Courtney Turcotte Bond
I wasn't acutely aware of cystic fibrosis until the school where I teach asked me to work with a homebound student with the disease. That was in 2015 when I met 15-year-old Madison Taliaferro. I tutored Madison three nights a week for two years, but it
wasn't long before I realized she was teaching me more than I ever taught her. Madison had received a double-lung transplant at age 12 and literally struggled with each breath to make the most of her second chance at life.
Madison and her transplant story fascinated me so much that it became the inspiration for my fictional novel, “Breathtaking,” which I started writing in 2017. She knew she had inspired my story, but she never got to read it. Cystic fibrosis took
her life during her senior year of high school in 2018. After her death, I was even more passionate about finishing the manuscript. I wanted to publish something powerful to honor Madison, bring awareness to CF, and address the importance of organ
“Breathtaking” may not seem to be about cystic fibrosis at first, but it plays a significant role. The plot follows Cara Ecrivain from childhood to college as she navigates through the unfair circumstances in her life. The novel touches on issues of alcoholism,
obsessive compulsive disorder, friendship, and love, but most importantly, it screams the importance of what Henry David Thoreau called “[living] deep and [sucking] all the marrow out of life.”
Luke PetersAuthor, “Coughing It All Up: Chronicles of a Remarkable Life Despite Cystic Fibrosis”
I wrote my book, “Coughing It All Up: Chronicles of a Remarkable Life Despite Cystic Fibrosis,” primarily as a form of therapy while on the waiting list for a double-lung transplant, and for my young children to be able to learn about me and my life should
I not survive the wait -- or indeed the operation -- to tell them myself.
I was born in 1972 and was diagnosed with CF at 13 months old. My parents were told that because of the limited treatment options for the condition back then, it was likely that I would spend much of my childhood in the hospital and would be lucky to
reach my teenage years.
Almost 50 years later and nearly two years after receiving my life-saving transplant, I am still with one hand fending off the impacts of this disease while grabbing life and all that it has to offer with the other. With a steadfast resolve to fulfill
my ambitions and a determination not to let cystic fibrosis define me, I have filled my life with achievements that few would have predicted possible at my birth. With two academic degrees, successful careers both in aviation and law, extensive worldwide
travels, and two healthy children, the book describes how I have always aimed to take as much out of life as possible before the ravages of cystic fibrosis take the life out of me.
Author, “Randall the Blue Spider Goes Surfing”
Ryeson Bull, 5, was diagnosed with CF when he was 2 weeks old. At age 2, he had surgery to get a feeding tube placed in his stomach, which is also when he dictated his first children's book -- “Randall the Blue Spider Goes Surfing.”
Our family was visiting Ryeson's grandfather who was in the intensive care unit because of a cycling accident. Ryeson wasn't allowed in the hospital because of his CF (and having to be careful of germs), so he and I [Ryerson's mother and co-author, Shana]
went to a playground at the Seal Beach pier. On the way back to the hospital, Ryeson was telling stories about how funny it would be to see a spider go surfing, but that he might be nervous if people were watching. I started recording Ryeson’s ramblings,
and “Randall the Blue Spider Goes Surfing” was born.
Three years later, the book was released online and in northern California stores. “Randall the Blue Spider Goes Surfing” is for kids who love outdoor activities, bugs (spiders, especially), ice cream, and friends. The book teaches children to name their
fears and overcome them by offering simple coping mechanisms … and lots of silliness.
You can connect with Ryeson and Randall at RandalltheBlueSpider.com or on Instagram.
Singer/Songwriter, “I Am”
My name is Sicily, I'm 14 years old and I have cystic fibrosis. Since I was little, I have always loved to sing. My dad is a musician and also shares a love of music and songwriting. We decided that writing songs together about living with CF would be
a fun and positive way to spread the word about my disease.
So far, we've recorded and released three singles, with four more on the way in June. “I Am” is my newest single and it's the most emotional song we've written about my life with CF. It really gets into the specifics of living with CF and how the disease
comes with many burdens -- hours of treatments, countless meds, and the daily struggle to breathe. On the flip side, the song speaks to the value of optimism, staying focused on the blessing of life itself, and being grateful for the loving support
of my family, friends, and community.
My parents have been so supportive of my music, setting up fundraisers and events to get the word out about what I'm doing, and helping me build interest on social media. In the last year and a half, we raised over $30,000 from concerts and music downloads
for the Cystic Fibrosis Foundation to advance their efforts to find a cure. If anyone would like to check out my music, please look me up at sicilypop.com or on Instagram or Facebook.
Author, “Terry's Journey to CF Land”
I am a 58-year old African American male who was not diagnosed with cystic fibrosis until I was 54, although I had been hospitalized and seen by an array of health care practitioners, unknowingly dealing with the devastating consequences of CF throughout
my entire life.
I am the co-founder and president of the National Organization of African Americans with Cystic Fibrosis, a nonprofit organization with a mission to engage, educate, and raise cystic fibrosis awareness in the African American community and beyond. I'm
also the subject and inspiration for the 2021 film, “54 Years Late: The Terry Wright Story.”
I share my surreal journey to a CF diagnosis in the children's coloring storybook, “Terry's Journey to CF Land: Navigating the Adventures of Cystic Fibrosis.” It is my hope that this children's book helps to inspire, uplift, and amuse children who have
cystic fibrosis and empowers them on their own journey to CF land.
Community Engagement Specialist, Cystic Fibrosis Foundation
Hannah is a community engagement specialist at the Cystic Fibrosis Foundation. In her role, Hannah engages with the CF community to develop content to support the Foundation's programs and manages the editorial calendar for the CF Community Blog. She has a bachelor's degree in public relations with minors in professional writing and business leadership from Virginia Tech. Outside of work, Hannah enjoys trail running, reading with a cup of coffee, and spending time with her family.
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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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