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.
For the longest time, I did all I could to deny that I had cystic fibrosis. Eventually I came to own my CF.
November 20, 2017
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Coming to Expect More From My Life
Back in the pre-internet Stone Age, it was easy to think I was the only person in the world with cystic fibrosis. For a long while the only other person with CF I knew was a girl about my age, 15 or 16 at the time, who had been IV'd up (getting intravenous antibiotics) in the hospital room next to mine.
We'd visited one another and chatted a couple times -- this was also before anyone knew about cross-infection -- and that was it. There was no Facebook, email, or cell phones, no real way to keep in touch. (There were regular phones, obviously, but you didn't just hand out that information to strangers back then.) Plus, the girl and I were both pretty sure the nurses were trying to set us up, a fact that made the whole situation weird and awkward.
All I really remember about her is that she was skinnier than I was somehow, and a fan of Insane Clown Posse. Meeting her was the first time I realized that cystic fibrosis was a real disease, with real consequences, and not simply something wrong with me.
Technically, I had been diagnosed with cystic fibrosis at 3 years old, but I didn't actually know I had CF until I was in sixth grade, when my parents signed me up for a clinical trial for dornase alfa (Pulmozyme®). And I didn't actually understand what any of that meant until my junior year in high school, when I came down with an unshakeable case of bronchitis.
After six months of sick days and constant coughing, my family's physician finally reached out to an actual pulmonologist, a cystic fibrosis specialist. She, in turn, explained the severity of the diagnosis, the ramifications, all the things I didn't know I should have been doing all along. I was treated for my first exacerbation, had my first peripherally inserted central catheter (PICC) line placed, met the Juggalo girl. Those two weeks were a cascade of life-changing revelations.
I promptly ignored all of them and went back to school like nothing had happened.
For a long time, and for any number of reasons, my only coping mechanisms were denial and spite. If I was having a hard time running, it was because track was stupid and the gym teachers were idiots, and definitely not because my lungs weren't working. If I was coughing up gross stuff and having diarrhea, well, that wasn't my fault either. The air in New Jersey was terrible; the pizza I had for lunch was too greasy.
I fought against acknowledging my cystic fibrosis for years, through high school and college and then some, before my declining health finally forced me to accept the truth and fight against the disease the right way this time, with drugs and treatments and common sense. I realized there was no shame in coming to terms with my own limitations and extra needs, and that doing so doesn't mean that those limitations will consume or define me. Taking a break isn't weakness. Knowing what's best for my continued existence isn't a failing.
Of course, as much as I'd like to claim an epiphany or having finally reached enlightenment, the truth is I didn't come to those decisions entirely on my own.
Well into my late 20s, I was still having a hard time committing to doing my meds regularly. I was drinking heavily and shrugging off my friends' smoking instead of yelling at them or leaving. I was spitting up blood as I drove home, coughing myself awake as I tried to fall asleep. I was in the hospital more and more. I knew I was in a bad place, but I couldn't seem to bring myself to do anything about it.
On my clinic's advice, I saw a behavioral therapist, to help me develop better habits, to help me realize I wasn't doing myself any favors. To give me the “Very Special Episode” speech about how real friends really care. Over a couple months, he talked me through the injustices of being dealt a crap hand, personal responsibility, and all of the other things I hadn't yet come to terms with. He showed me how to move from petulant anger and disbelief to acceptance.
That's actually the other thing I remember about the girl from the hospital: She was angry, just like me. And, really, why wouldn't we be? Cystic fibrosis sucks. But there's a difference between being angry at the world and using that anger productively.
You really want to stick it to CF? Own it, and survive.
Adult with CF
Eirik Gumeny is a freelance writer and the author of the Exponential Apocalypse sci-fi series. His work has appeared in publications ranging from Cracked to The New York Times. Diagnosed with cystic fibrosis at age 3, Eirik had a double lung transplant in 2014. He lives in Albuquerque, New Mexico, with his wife and their two terrier terrors. His website is egumeny.com, and you can follow him on Twitter and Facebook @egumeny.
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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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