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.
I had all the classic symptoms of cystic fibrosis, but neither I nor my doctors ever considered them in their totality. The symptoms were treated like separate problems -- asthma, nasal polyps, digestive problems -- until one specialist noticed a tell-tale sign that brought about my clarifying diagnosis.
November 18, 2020
How I Found Acceptance for My Trikafta Weight Gain
Why It Didn’t Matter That My Future Wife Had CF or a Lung Transplant
I was 35 years old when I was diagnosed with cystic fibrosis.
Surprised? Yeah, me too.
I remember trying to express that surprise to the first doctor who mentioned it as a possibility.
“Wouldn't I know if I had cystic fibrosis?”
“You would think,” she said. “Cystic fibrosis is not subtle.”
Turns out, it was at least a little bit subtle. I had been too subtle about symptoms, and every doctor I had ever seen was, apparently, bad with subtlety. That brought me to this moment -- sitting in a urologist's office and hearing a scary idea.
My wife and I were having fertility problems, and some preliminary testing revealed the source to be me. The urologist doing the physical exam knew almost immediately. Congenital absence of the vas deferens. It explained the fertility issues and it's also associated with cystic fibrosis, they said. Maybe I was a carrier. Or, maybe, I felt a few of the effects.
There was a workaround for the fertility issue -- I'm now the proud dad of a little girl -- but the CF? Seemed like something we should probably look into.
A few months later, I met with doctors from the cystic fibrosis clinic at Hasbro Children's Hospital in Providence, R.I. They did the sweat test. While we waited for the results, they listened to my story. I was relatively healthy, but with some chronic issues that had never been fully addressed: asthma, lots of sinus infections, a few bouts of pneumonia, nasal polyps, annoying cough, trouble gaining weight, osteopenia, and digestive problems.
Hearing all that, they didn't really need to see the sweat test results.
I didn't have the classic mutations, but the disease had made an impact, particularly because it had gone unchecked for so long. As shocking and alarming as it was to get the diagnosis, there was also relief. It explained everything and, thankfully, treatments have been effective. Lung function is up. I finally put on some weight. I feel about as good as I ever have.
I try not to dwell on the damage done before I knew, but I do try to learn from how it was allowed to happen.
I took for granted that doctors had it all figured out, never realizing how much we as patients must drive the conversation.
I needed to ask more questions, to push harder for answers, to not accept a misdiagnosis like asthma when it seemed like maybe something more was going on. I also never grasped the limitations of specialized medicine. Of course, an allergy and asthma specialist will treat allergies and asthma. An ear, nose, and throat specialist will focus on polyps. A gastroenterologist will hone in on celiac disease. No one ever put all the puzzle pieces together.
The fault lies with me, too. I wasn't always honest about symptoms. I convinced myself that I was basically fine, and I didn't want anything more to be wrong. Along the same lines, I didn't pay close enough attention. I put my head down and kept going, not noticing that what was once a mild cough was getting about 1% worse every month for years.
Two years in, I'm still a work in progress, but I try to keep all of that in mind for clinic trips. I ask every question I can think of. I don't leave anything out when talking about symptoms. And in between visits, I pay closer attention than I ever have. I'm slowly learning how to feel what's happening in my lungs, instead of ignoring it.
My story is unusual, but those lessons are not. Be your own best advocate. Be honest with yourself. Pay attention.
We're all capable of it. On the day I got the diagnosis, the doctors said they understood if I was overwhelmed and wanted to wait a few weeks to start treatment.
I said I wanted to start right away.
There was no time to be subtle.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
A native of Louisville, Ky., Will is a sportswriter in Rhode Island. He is also the author of “Summer Baseball Nation: Nine Days in the Wood Bat Leagues.” Find him on Twitter.
Share this Post
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.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails