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.
When I turned 29 last year, I told my family that I was going to attempt a 24-hour fitness challenge to mark my 30th birthday -- an age I wasn't supposed to reach. Despite having cystic fibrosis, I am determined to inspire hope and highlight the importance of fitness when it comes to CF.
July 13, 2017
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When I was born in July of 1987, something just wasn't right. My stomach was severely distended and the doctors were fairly sure I had a
blockage in my bowel. After an initial assessment, the surgeons told my parents I had a 10 percent chance of living through the night. But despite undergoing intense surgery, I survived.
Through a sweat test, the doctors found that I had cystic fibrosis -- a disease my parents had never heard of and had very little information about (keep in mind nobody really had the internet back then, which makes me feel slightly old).
Back then, the predicted median age of survival for someone with CF was in the late teens. “He probably won't make it to his 20s and will be very lucky to make it to 30,” the doctors said. Fortunately, my parents, two older brothers, and older sister didn't fully accept what they were told. At the age of 2, my family took me on a holiday from our home in Wales to the United States to visit family friends in Dallas, Texas and, little did I know, the local CF center for a full review as well.
After a full day of tests, my parents asked the doctor what they should do to give me the best chance at a full life.
“Run his legs off, and when he stops, pick him up and get him to do it again.”
Needless to say, this was the start of something … something that would come to change my life.
After that day, my parents bought a trampoline, and they, along with my siblings, would bounce me up and down, play football with me (that's soccer by the way, and it mainly consisted of my brothers blasting the ball at me in goals, because why not?), and generally kept me running and running and running.
With so many plans in my mind and challenges to pursue, I found it hard to slow down. When I turned 21, however, I had no choice. I began to experience extreme chronic stomach pains and within days, was admitted to the hospital for emergency surgery. What was supposed to be a two-hour operation turned into seven long hours -- and it wasn't pretty.
When it was finally over, the surgeon told me that if I wasn't so fit, I most likely would have died. In that moment, I truly understood that sports and fitness have not only played such a huge role in my life by helping me build relationships and have fun with friends, but they've also helped me to stay alive.
When I turned 29 last year, I told my family that I was going to attempt a 24-hour
fitness challenge to mark my 30th birthday -- an age I wasn't supposed to reach. Although they are used to me setting ridiculous challenges for myself, this one really did take their breaths away.
I did some research on extreme fitness challenges and started training. And by training, I mean ridiculous amounts of sweat (salty sweat for that matter), pain, cramps, food, and some tears as well.
On July 28, 2017, I will exercise non-stop in an effort to raise money for cystic fibrosis and -- more importantly -- awareness of what can be achieved in CF through sports and exercise. Within these 24 hours, I will attempt to:
My ultimate goal is to inspire hope and let every family and young child with CF know what's possible -- whether that means running a mile, keeping a daily exercise diary, or walking up a flight of stairs.
In the moments when I start to think, “I'll just give up” or “this is too hard,” I remind myself that some people don't have the privilege of being able to give up. That's what this challenge is all about -- showing the general public that it's possible to overcome extreme odds and showing CF warriors all over the world that, for at least 24 hours, we are thinking of them.
DISCLAIMER: Adults with existing medical conditions like CF should talk to their health care provider before starting an exercise program. Your care team can work with you to develop a fitness plan tailored to your individual health, needs, and goals.
Adult with CF
Josh was diagnosed with CF when he was born in 1987. Today, he is a fitness fanatic who runs an advertising company in Cardiff, South Wales. Fitness challenges have become a huge part of his life, and he is passionate about spreading awareness of sports and exercise for CF through his 24hrs4cf campaign. You can follow Josh on Facebook, Instagram, and Twitter.
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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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