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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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, my parents always encouraged me to take responsibility and be open and honest about my disease. That's why my number one piece of advice for parents of kids with CF is to entrust your child with small bits of responsibility at an early age so that they can take care of themselves down the road.
Lauren Bombardier Weeks
June 28, 2017
Why I Believe in Teen Advocacy Day
Ask a Case Manager: Health Insurance, Living Expenses, and Clinical Trials
parents of young people with cystic fibrosis is one of my favorite things to do. The main reason I find it so special is that I often get to brag to them about all of the things my parents did for me that led me to thrive as an adult with CF.
As kids, we sometimes just want to be let off the hook and take the easy way out, having mom and dad take care of the countless demands that come with this disease. And sometimes, parents feed into those feelings. But whenever I think back on my own parents' approach to my CF, it's the things that made me roll my eyes at the time that I am often most grateful for today.
That's why my number one piece of advice for parents of kids with CF is to entrust your child with small bits of responsibility at an early age, so that they have no excuses not to take care of themselves down the road.
When raising a child with CF, a common pitfall I've noticed is how easy it can be for some parents to want to control every aspect of their child's care, beyond the
medications and the daily treatments. For example, CF can sometimes be hard to talk about for a child, but if my parents never forced me to take responsibility for those conversations myself, I wouldn't be able to have them so easily today. So, I coughed my way through gym class and organized sports, took my vest and nebulizers on
trips with family or friends, and
talked to my teachers about the
enzymes I needed to take with food or why I needed to go to the hospital. I was the one who had to face the uncomfortable moments of telling my coach I needed a break, explain my treatments to my new friends, rock a mask on an airplane, and ask my college to replace my dusty carpet with tile floor.
It's important to note that I didn't take on all these things right away.
I hated talking on the phone, scheduling appointments, and ordering medications, and I begged my mom to take care of these things sometimes. But as I grew up, my responsibilities increased incrementally, until one day, I was handling it all by myself. My mom still acts more like a consultant to my care -- someone to bounce questions off of and reassure me when needed -- and it's so important to have an advocate like that as you navigate the ups and downs of life with CF.
By the time I was in
college, I was going to
care center appointments by myself, sometimes even bringing a friend along for fun. Today, my experience as my own advocate has allowed me to tell my workplace when I need a break, to explain to friends why I might be too tired to hang out with them, and to be open and honest about how I deal with CF to friends both old and new.
Some people choose to keep CF a secret, but I've been so grateful that my parents were always open about it. This meant doing my treatments in front of friends during sleepovers, talking about it openly in front of extended family, and asking for accommodations in college when I needed to. In fifth grade, I even picked CF as the topic for a report and brought my vest in for show-and-tell.
Being honest about my CF has opened up so many doors for me in my life. It has allowed me to
stick with my treatments and understand what it means to be truly supported. Yes, it was sometimes uncomfortable talking about a not-so-glamorous disease as a teenager, but my best friends have been the people who take an active role in my care: reminding me to take my pills, watching movies through the sound of my vest, and even recognizing when my cough doesn't sound like it usually does.
My parents instilled an attitude in me of not only taking responsibility for how I communicate about CF, but how I frame the conversation honestly as well. Without this, I wouldn't have such supportive friends and relationships, and I wouldn't have the maturity to take control of my health. I can't thank them enough for that, and I truly believe it is the key to living with CF as an adult.
Lauren Bombardier Weeks
Adult with CF
Lauren is 27 years old and is from Massachusetts, where she enjoys running, hiking, and skiing with her husband, Kyle. She works full time in human resources for a nonprofit focused on improving education and health worldwide and is the author of the blog, “I Have CF, So What!?” Lauren also is working on her first book entitled, “Growing Up Sick,” which details how her parents gave her the strength to live her life despite CF. Read her blog, at http://thesowhatlife.com.
Share this Post
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.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails