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 starting Trikafta, I decided to try running again, and I grew to love it. Because of COVID, I had to conduct my own races in 2020, but now I have joined a running group and am preparing to run my first marathon at the end of September.
September 22, 2021
How Three CF Diagnoses Changed My World
Bonding Over Breathing
In the summer of 2019, I was contemplating if I would be able to make it through the school year without a hospitalization. I really focused on my self-care routine of exercise, treatments, rest, and proper nutrition. I started doing some research and reading about running, which I had always been interested in as a form of exercise. Toward the end of summer, I attempted a run to see how I would do. I got to about a quarter of a mile before I had to stop to catch my breath, then proceeded to have a coughing attack. It quickly turned into a walk after that.
I had a routine CF appointment at the end of October at which my lung function was sitting at 65% and I had a significant amount of unintentional weight loss. At the end of November, I started Trikafta®, and I noticed a difference within a couple hours of taking my first dose.
I could take a deep breath without feeling like I had a cinder block on my chest.
Within a month I couldn't remember the last time I had coughed. A few days before the new year, I decided to test my running ability since I wasn't constantly coughing. I was able to run 1.5 miles continuously without getting winded or having a coughing attack. My legs were fatigued before my lungs. This run opened up a world of possibilities for me. I decided to create a running goal for myself to average 20 miles a month in 2020.
I tracked my running goal the same as I have tracked all my other self-care goals since grad school -- a monthly calendar with a color-coded system of dots to track my goals and treatments. If I was on a Cayston® month (i.e., inhaled medication three times a day for 28 days), I would add a pink dot after each completed treatment. If I read for at least 30 minutes, I would put a red dot on that day and add purple for a workout. I loved the visual and sense of accomplishment as the month filled up with a rainbow of color, and it helped me stay motivated and accountable to myself. I now track my miles each week along with other workouts and sports and total the miles at the end of the month.
My first follow-up appointment after starting Trikafta was early February 2020. I was actually excited for this appointment! My pulmonary function tests had jumped to 85%, which was a 20 percentage-point increase in a matter of a couple months. This gave me the confidence to continue pushing myself and sign up for some races. I signed up for a 5K in March, and I thought a local 7-mile race (BIX) at the end of July would be a good goal for six months into my running progression. BIX is a very hilly course, and the atmosphere is very lively and fun. I even entertained the idea that I would be ready for the local half marathon at the end of September. I had my plans all mapped out; then COVID hit. My March race was cancelled, and BIX was virtual. I was bummed out that my milestone race experiences were not able to happen as I had originally planned.
My 30th birthday rolled around and my parents -- knowing that I am a goal-oriented person -- asked me what I wanted to accomplish in my 30th year. My response was to run some races. I couldn't wait to get the real race experience. I found myself coming back to that question several times over the next couple days. I was getting frustrated that I had my progression planned out but wasn't able to experience races.
I let myself have a pity party for a day, then decided to take matters into my own hands. I decided to map-out my own half marathon and started training for it.
Twelve weeks later, I completed it along with a handful of friends. I felt blessed to have family and friends provide support stations along the way to make it feel like a real race. I was so proud of my accomplishment.
Within a few weeks after my half marathon, I started questioning, “What now?” My friend who has run several marathons told me that if I can run a half marathon, I can run a full. Even though the suggestion came as a surprise, I had given some thought about running a marathon someday. I quickly decided the time was right. I set my goal to run a full marathon in 2021. In the months following my half marathon, I finished out my 20-miles-a-month running goal and participated in some fun challenges to keep me motivated through the winter months. I also did a lot of reading and research on marathon training to prepare myself. I recently completed my long-awaited first official BIX race, joined a running group, and am currently in full marathon training mode for my marathon at the end of September.
Running has become an important part of my life. I am thankful for all the opportunities Trikafta has opened up for me, and this is only the beginning. I've found my happy pace.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Liz attended Augustana College in Rock Island, Ill., majoring in psychology and communication studies. She earned her master’s degree in school counseling at Western Illinois University-Quad Cities and works as an elementary school counselor in Bettendorf,
Iowa. She stays busy playing volleyball, softball and golf, and running. She loves to read and spend time with family and friends. You can connect with her on Instagram and Facebook.
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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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