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.
Growing up with cystic fibrosis made me feel different and like I had a lot to overcome. The road that led me to my own personal training business showed me that CF has shaped me in good ways.
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I was diagnosed with cystic fibrosis at birth. Little did I know how much it would affect my life. As a toddler, I was fragile and was in and out of the hospital. I realized at a young age that I wasn't like all of the other kids in school. None of the
other kids had to take pills before they ate. None of the other kids had to take a break from recess because they couldn't breathe.
I remember those days very clearly, but it challenged me to be the person I am today.
Through elementary, middle, and high school, I viewed life through a different lens. Although I knew I was different, I was also in denial about what that difference meant. I was told I couldn't play sports, but I went out for every sport I could --
soccer, football, basketball, and baseball. During high school, I accepted that I was different and hid my CF from my friends and peers. When I was a freshman in high school, I took a year off from sports because I was very self-conscious of my cough
and people always asking me if I was sick. I played varsity soccer for the last three years of high school and was offered college scholarships, but I felt that my lungs wouldn't be able to keep up with conditioned college athletes.
After high school, I enrolled in college classes I thought were interesting, not really knowing what I wanted to do with my life. Having CF made the simplest things, like sitting in a classroom, almost impossible.
I felt self-conscious about coughing in a classroom, or having to hold in my coughs when getting a haircut so I wouldn't move, or sitting through an entire movie at the theater trying not to cough.
After going to college for a year, I decided that it wasn't for me. I moved back home to live with my mom and stepdad for about three months before deciding to move out again. I started working two jobs to support myself. Shortly after, I decided that
I wanted to become a nationally certified personal trainer and began studying for that test. After about a year, I decided to follow my dreams. I packed my things and moved to Los Angeles.
I had always wanted to train celebrities and professional athletes, so I searched for jobs within that field and soon began working in corporate gyms. Within three months, I ran my own training department with 15 staff members. Although I was professionally
successful, I was working 60-hour weeks and suffered an enormous number of lung infections.
This was one of the most mentally challenging journeys I've ever been on. It was difficult to set a good example for my employees when I was struggling to just breathe and not getting enough rest.
The lung infections forced me to take time off. When I was working people often asked, “Are you sick?” I realized that I wanted to be my own boss and control my own schedule so I could maintain my lung function and have a clean bill of health. So, I took
another calculated risk by quitting my job and opening my own personal training business. Running my own business gives me the opportunity to change people's lives every day. I am very blessed to teach people how to lead healthy lives through fitness
and positive thinking.
The most important thing that my life has taught me throughout the years of living with the good and the bad of CF, is that it's all about my mindset. I have to be positive and treat people well. I have to focus on gratitude for my family, friends, and
the people that support me.
I believe I was blessed because this disease has made me the confident, strong person I am today. So even though I'll never run a 4-minute mile, hold my breath under water for too long, or be able to wake up and go about my day like a normal person, I
know that everything I've accomplished is amazing and stands for something. I'm happy about who I am and how strong I am, and I'm lucky that I can motivate people with and without CF to live healthier lives.
Life is all about love and positivity. Living with cystic fibrosis makes life different and difficult at times, but I am happy and I am loved by my family, friends, fiancé, and dogs. I am proud to say that I am not scared to tell people that I have CF
anymore. I don't need to hide it. I no longer care if people see me take pills before meals or if I have to stop to catch my breath sometimes. I'm a motivated and loving person, and my disease does not define me. I am making something great out of
it, and making something great out of my life. I'm happy to say that I accept everything that CF throws at me because I know that I'm strong enough to overcome it all and will continue to get stronger every day.
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Adult with CF
Diagnosed with cystic fibrosis at birth, James has been working in the fitness industry for nine years and owns his own personal training business. James uses social media to demonstrate overcoming adversity and spreading positivity through health and fitness. He and his fiancee, Paulina, live in Los Angeles with his two dogs, Tinkerbell and Violet. Follow him on 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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