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.
With cystic fibrosis, it is easy to compare yourself to others and feel like your accomplishments are less impressive or significant than the people around you. Fortunately, I've found four ways that help bring me out of this mindset and set achievable, realistic, and fulfilling goals.
November 15, 2018
Reflecting on 500 Posts on the CF Community Blog
My Slide into Substance Misuse
Having cystic fibrosis, we sometimes encounter limitations that require us to revise our plan to achieve our goals. As my husband says, “We do not limit or change our goals; we only change the path to get there.” In other words, our road may not always be easy -- and we may have to work harder than a “healthy” individual -- but we can still achieve our dreams. Although there are many uncertainties when it comes to living with cystic fibrosis, I try to focus on what I CAN do to improve myself.
It's really easy to compare yourself to others in your circle of family or friends. There are times when I think about how the people around me are achieving all these absolutely GREAT things in life, whether it's getting a job promotion, having children, or climbing the corporate ladder.
Meanwhile, I woke up, did two hours of breathing treatments, exercised, and worked eight hours -- achievements that don't feel as “big” as my friends' and family's successes. As someone with CF, it's important to remember that these daily achievements are huge. In a way, our successes are even greater than the success of a new job or a promotion because we are literally working toward staying ALIVE!
This upcoming year, I challenge you to work hard toward your goals. Here are a few tips that I've found helpful for goal setting and motivation:
Find something that you are able to change and begin working toward that goal. Whether it is starting an exercise program, eating better, or being more compliant with treatment or medication, start slowly and make your way toward improvement. Keep a journal to track your progress or tell your family and friends about your goal. After all, it can be helpful to have someone hold you accountable for your actions (aka, yell at you when you're not keeping your goals).
It's so easy to look at social media and become instantly overwhelmed with all the job promotions, vacations, new cars, and big houses and feel like the world is judging you for not living up to the lifestyle of others. Remember: You are usually harder on yourself then your family and friends are. Stop trying to “keep up with the Joneses” -- it's not worth your mental health!
Find something you love to do and turn it into therapy. Do you enjoy jumping on the trampoline? Not only is this activity fun, but it's also a form of exercise and stress relief! Love swimming? Join a local gym or YMCA and swim year-round! Love cooking? Take cooking classes and have fun trying to add in extra fats, nutrients, and calories. It's easier to keep moving forward when you enjoy what you are doing!
When you have a chronic illness, it sometimes feels like you are trying to desperately grasp at straws to improve your health or situation. We are constantly searching for new remedies, medications, therapies, treatments, and everything else. Don't forget to be thankful for what you do have. Remember, every breath you take is a gift that you have to work hard for. In the whirlwind of life, choose JOY!
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Adult with CF
Meagan was diagnosed with cystic fibrosis at 8 years old. She has been volunteering and fundraising for the Cystic Fibrosis Foundation’s Great Strides event since the early 2000s, as well as for CF Cycle for Life since 2015. She spends her days working in patient education at her local hospital, and is heavily involved in her care center’s CF patient advisory group. Her hobbies include traveling, photography, the beach, and spending time with her family and husband, Justin.
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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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