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.
Thinking of a food elimination diet? I tried one and learned some lessons along the way.
Lauren Bombardier Weeks
March 1, 2018
How Everyone Can Be a Part of VLC
Why I Decided to Take Time Off From Work
Growing up with cystic fibrosis, I was always told to keep my weight up, which meant I ate whatever I could -- at all costs -- to keep me in a normal range. This meant I loved McDonald's Chicken McNuggets and anything with cheese on it and scoffed at things that were too healthy, too organic, or too boring. Let's put it this way: I was never the person who ordered a salad at lunch when the rest of her friends did so.
But recently, I embarked on a journey to change the way I eat to experience firsthand whether eating healthy food would actually make me feel better. After discussing with my CF care team, I went on a 30-day food elimination diet. I stopped eating certain foods to see if I could reduce inflammation in my body. I didn't just stop eating everything I loved for a month. I had to systematically re-introduce “less healthy” things to see how I felt.
In November, I gave up gluten, grains, legumes, dairy, alcohol, added sugar, and processed foods in favor of delicious real food like fruits, vegetables, and meat. The results I experienced were amazing. I had energy, felt less wheezy and congested, and was able to get out of bed when my alarm went off. I no longer felt the need to nap come 2 p.m., and my head was clearer. I was more focused, and my mood improved. When I reintroduced the less healthy foods, I found that gluten and soy made me feel like I had just rolled around in cat hair; dairy made me bloated and phlegmy; and added sugar just made me tired and foggy.
Now, after finishing my second round of this diet, to give myself a reset after gorging on all the things that make my lungs feel sad, I thought it would be helpful to share what I learned with my fellow “CFers:”
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