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.
Despite my diagnosis of cystic fibrosis, I show no symptoms and have an above-average FEV1. I struggle more with survivor's guilt than I do with this disease.
June 9, 2020
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Please join me as I walk you through the journey that has been my life with cystic fibrosis and the survivor's guilt that's been its partner in crime.
When I was 10, my mom received a phone call about the results of various tests that -- at the time - made no sense to me. She called me into her room in our home in Canada and said, ''We've just won the lottery!'' I didn't know much at the time, but I
did know that meant money! Needless to say, no money ever arrived -- that was her way of letting me know that I didn't have CF.
Fast forward six years and my then-family doctor was at a conference for cutting-edge CF news. It was there that she happened to talk with another nurse who had been reviewing my test results -- the upshot being that I did, in fact, have CF. From there
my head spiraled with coming to terms with all things CF-related.
Fifteen years after the diagnosis of having both genes, while on my annual visit to clinic this past September in my new home in England, the team's doctor asked me what mutations I had because
I haven't ever displayed symptoms. (It turned out that the files from Canada regarding my gene types had either never made it to England or had been misplaced.) I'm also among the 2 percent of males with CF who can have children and my FEV1 has always been north of 100 percent. He wanted to test my DNA to see which mutations I had. As you read this, I'm still waiting for them to confirm that I do have CF.
Because I have a good friend with CF who has around 30 percent lung function, I have always felt dreadful. It doesn't seem remotely fair that for the past 15 years I haven't had symptoms. The time it hit me the hardest was when I got on a train in London.
I read in the newspaper about a 28-year-old woman who had CF. Her one life goal was to get married. She ended up marrying her long-time boyfriend while she was in the hospital. Just a few weeks after the wedding, she passed away. I cried for the entire
hour-long journey. It's hard to put into words the guilt I felt and feel. Even writing this now is hard.
The challenge of this entire situation is that -- on one hand -- I understand what CF means and how it ultimately will treat me no differently than the rest of the community later in life.
On the other hand, it's a struggle to come to terms with being given such a mild form of something that -- in most other cases -- is an absolute nightmare for the ones who are afflicted with it.
Feeling guilty is a daily occurrence and not one that rests lightly. Please know if you are also in a similar camp, we few owe it to the entire CF community to do everything in our power -- each day on this wonderful Earth -- to do what they struggle
to do. Personally, I have a real love-hate relationship with running -- I hate having to do it, but I love how it helps me mentally. Running a 3K three times a week helps not only
clear the lungs (Who doesn't love a good FEV1 score? Can I get an amen!), but it also gives me the chance to sort things out in my head.
It's our duty to go forth and make the most and best of a bad situation. We should never give up on our dreams and goals, push forward to give back to the less fortunate in our clan, and shine the brightest light we know how to shine in this seemingly
overwhelming darkness. So, if you're like me, please go for a run, play sports, do the unthinkable that so many of our brothers and sisters may struggle to do.
Personally, I play the drums to stay fit and have been fortunate to make that a career. In the past, I attempted a drum-marathon to raise money for CF. I've applied to do it again once this pandemic is over and will be aiming to play 150 hours and raise
(hopefully) $1 million for CF.
Together, we are unstoppable and stand stronger than CF would want us to. Let's send it packing one jog, one touchdown, and one step at a time!
There is nothing impossible to him who will try. -- Alexander the Great
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Colin is a native of Amherstburg, Canada, who was officially diagnosed with cystic fibrosis at age 16 after being told six years earlier that he had only one gene. Now at 29, he’s being told it’s unclear what the second gene is, if it’s even there at
all. Colin moved to England from Canada in pursuit of a drum degree and music career. He now works in studios for artists and in a folk band, ‘’Modern Hinterland.’’ When he’s not behind the drums, Colin enjoys working out, studying history, and growing
coffee. Follow him on Drum Nerd on YouTube, Instagram @bydandfitness, or send him a message.
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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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