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.
Taking a therapeutic writing course helped me cope with my cystic fibrosis, which also helped me connect more strongly to the CF community.
March 4, 2019
Watch the Vlog: 2 Sisters Talk Five Feet Apart
How Color-Coding a Calendar Helped Me Decide When To Get Listed For a Lung Transplant
“I don't have anything interesting to write,” I said. I meant it.
My journalism mentor, Jay Hartwell, crinkled the skin between his eyebrows and stared at me in surprise. Then, he laughed.
“You're a writer, Brad, and with more stories than most thanks to your disease.” It was that simple to him. But, not to me. Not yet.
I had been offered a column with HuffPost in 2015, and I sought Jay's advice on whether I should take the opportunity. I'd eventually turn it down because I feared boring my readers or appearing egotistical by writing about myself.
At the time, I wrote magazine profiles about small businesses and personalities whose stories I'd deemed infinitely more intriguing than mine. But, then I was kicked into end-stage cystic fibrosis and I became deaf, so I couldn't interview anyone. I sat
in total silence with my thoughts and memories for months. Eventually, the memories made me realize my life wasn't so boring after all. In my last essay for a magazine I worked for, I wrote about learning to tell my own story.
While awaiting a double-lung transplant, unable to work, I found companionship in people who followed my story for inspiration and perspective. This added
purpose to my journey; it was something shared and so, despite my deafness, I didn't feel alone. My voice was heard in the most alienating circumstances.
Two years post-transplant, after writing hundreds of blog posts and columns, I haven't yet run dry of material. I've used my story to advocate, spark awareness, comfort, and -- occasionally -- make others chuckle during tough times.
Cystic fibrosis gives us darn good stories. We aren't all masterful or even slightly competent storytellers, but we all do have stories, yes? The genetics of a compelling story include unique experiences and perspectives, and maybe even tragedy or an
underdog-overcomes-the-odds tale. I haven't met anyone with CF whose life isn't saturated by those qualities.
“Write when emotion begs it,” that's what Paul Lyons said. A professor with severe melanoma, Paul taught a class called Autobiographical Writing About Illness. We discussed writing's therapeutic value, the dilemmas of romanticizing disease, and how to
force an audience's eyes on you. He also taught me to respond to those begging emotions -- rage, grief, mania, anxiety -- by harnessing them for art. He helped me build the
skills to make CF my story, my controlled narrative.
Over tea one day, Paul demanded I compose a memoir. He said I'd be wasting a good story if I didn't write. I said I lacked the skill and he charged me with wonderful words about my writing, saying to stop doubting myself.
Now, I write directly to the CF community, realizing that I had so dearly respected Paul because he intimately knew illness. He exhibited empathy, the most powerful communicative and therapeutic tool for a condition that alienates us from not only common
society but from our own disease community.
I eventually moved from my blog to a weekly column for Cystic Fibrosis News Today so I could share my story and that therapeutic empathy with many more people. I then transitioned to being in charge of columns for dozens of other rare disease
Last March, I told Paul what he'd done for me and how grateful I was. Days later, on Easter, cancer stole Paul away. He left legacies of written word and empowered students. I've begun drafting his requested memoir.
Paul once wrote about sitting in hospital waiting rooms and watching the Food Network while he mourned the taste buds burned from his tongue by chemo. He wrote it in torment, later telling me it was his only comfort.
Now, when I find myself under intense emotional distress, I focus on rapidly jotting down one-liners, metaphors, and thematic ideas for later use. Thinking of my life narratively reminds me that each torturous period is only a chapter in my life story.
I respond to horrific events by saying, “This will be a funny story later.” If I get cancer (transplant medications make that likely), I get a memoir sequel. I remind myself that my favorite type of memoirs end with the peace of ending a long, tough
journey and realizing everything is OK. I will have that ending.
Writing is therapy. Release pain by purging worries onto paper -- catharsis. I'm not saying you should become a professional writer (though you shouldn't fear the idea). You don't need to be a skilled or published wordsmith. Just write -- in
a journal or a blog, on a napkin or receipt, for a magazine or foundation. Or paint. Or make music. Or act. Or direct a film. Experiment with art that filters the suffering from your psyche. Pursue art and don't let CF suffocate it. Instead, make
CF your creative fuel.
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Adult with CF
Brad lives in San Jose, Calif. as a freelance writer and editor. He graduated from the University of Hawaii with degrees in history and journalism. When not writing small business profiles and cystic fibrosis awareness pieces, Brad is serving as president of the Northern California Chapter of The Lung Transplant Foundation. He's also hiking and rock climbing to celebrate his recent lung transplant. Follow Brad at his blog, Adamantium Joy, or on his Facebook page.
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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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