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.
After fighting an awful infection, I had written off my dreams as 'impossible.' But after encouragement from my family and plenty of training, I made it my mission to not let CF stand in my way.
December 18, 2019
Recognizing Works by the CF Community
Role Reversal: How I Balanced Caregiving as a CF Patient
I was diagnosed with cystic fibrosis when I was 8 days old. I grew up doing the usual CF things. I did treatments, took meds, occasionally went on IV therapy -- the whole nine yards. At a young age, I began to understand what CF is and the role it would play in my life. When I was 15, however, I learned the difference between just understanding life with CF and really living life with CF.
Early in 2016, I was growing nontuberculous mycobacteria in my lungs. To this day, it is still one of the worst infections I have had. I had to get a chest tube surgically placed and go on IV medication for nine months. This was one of the most challenging things I have been through, physically and mentally. It was during this time that I started actively trying to learn more about the disease. When I looked up the average lifespan of a person with CF in February 2016, it was around 47 years old.
I knew from a young age that my life was being shortened by this disease, but getting a specific number in my head shocked me; that number was constantly in the back of my mind even though I tried to forget about it.
In January 2017, I had just finished my IV therapy and was finally on the road to recovery. During this time, I was at a big three-day hunting convention in Reno, Nev. Each night there was a nice dinner in a large banquet room. One of those nights, a wounded warrior gave a speech about her injury and near-death experience. Listening to her story made me very emotional -- I sat at the table crying.
Later that night, my dad came up to me and we started talking about why I was crying. I told him it was because I didn't think I was going to live long enough to do some of the things I wanted to do in my life. He then asked me what it was I wanted to do. I knew that what I most wanted to do was to complete a very challenging hunting trip that would be physically demanding. I felt discouraged because I knew it would be impossible for me to do -- the location is very remote and the lack of electricity there would make it harder to do my treatments.
But to my surprise, my dad told me I can do anything I put my mind to if I work hard. And with that, I decided to commit to going after my dream. This goal posed many challenges. I had to get in good enough shape so I would be able to hike steep mountains for extended periods of time. I also needed to figure out how I would be able to do my treatments while staying in tents in the middle of nowhere.
I began training the day after I got home from the convention. I started by hiking the small mountain in my neighborhood with my dad. It was not very steep and the whole hike was less than a mile. My lung function had dropped to 52 percent because of my infection, so that made my first training hike an immense struggle. I had to stop about every 75 yards to cough and catch my breath. But from then on, every hike gradually became easier, and my lung function got better, as well. I continued to hike longer, steeper hikes with higher elevation. In July 2017, after six months of training, I was able to hike 10 miles with minimal coughing and my lung function had risen to 65 percent!
It was time for my first hunt. My mom and I had figured out how I would do my treatments on the mountain and I had trained with my dad. This was an experience that changed my life forever. I was rarely out of breath and didn't cough on the hike, and I was able to successfully complete my goal.
I learned many things about myself throughout this whole journey. I learned that I had assumed some goals were impossible before I had even tried to accomplish them. Once I decided to go after the impossible, I was able to work hard and make it possible.
I also learned that CF doesn't define me. This is the one that has changed my life. I grew up being the sick kid, the diseased kid. I thought I was defined by the disease that I was born with. However, that is not the case.
CF is and will forever be a part of me, but now I don't let it define me. I embrace my disease and use CF as a reason to challenge myself, a reason to live life to the fullest. CF makes me the person that I am today, but it no longer defines the person that I am.
Young adult with CF
Jennifer was diagnosed with cystic fibrosis when she was 8 days old. She plays tennis and is an avid hunter and hiker. She loves spending time in the outdoors especially with her family. Jennifer became the first person with CF and the second youngest female to harvest all four North American Wild Sheep. She started a podcast called “Journeys with Jennifer Griego” to share her story and talk to all types of people about their life’s journey. Jennifer lives with her parents, two brothers, and their dog in Phoenix. You can find Jennifer on Instagram at @jen_griego.
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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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