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.
My pulmonary function test results are important in telling me about my cystic fibrosis, but it's only one measure of my overall health.
November 6, 2018
Navigating My Newlywed Life With CF
Choosing How I Approach My Daughters Diagnosis
At a recent cystic fibrosis care team appointment, one of the team members said to me, “Your [pulmonary function test (PFT)] numbers haven't gone up, but you feel better, right?” That got me thinking. As a CFer, my health is so often reduced to a tiny number. 1.8, 2.05, 2.6. It seems that it's the one number that drug companies care about, and one of the only measures of health that my care team looks at. I was shaken by the recent death of Claire Wineland, who served as an example to me by not letting CF define her and creating happiness beyond the disease. I try to follow Claire's example, but that can be tough when so much emphasis is focused on my PFT numbers.
If I'm being honest, I still get bummed out over a “bad” PFT. I'm compliant with my daily care. I take time for myself. I ask for help when I need it. And still my PFTs aren't always where I wish they could be. That's the nature of the CF beast. Sometimes, no matter how hard I try, my health has other plans. That's why using PFTs as a main measurement tool can be demoralizing and hard to swallow.
I don't mean to trivialize pulmonary function tests. They are an incredible tool and a good data point to track my ongoing health. Personally, my PFTs have hardly budged in years. To me, that's good news! For a progressive disease, continuing down the same path that led me to be a healthy 30-year-old is something I'm happy to celebrate. So, no, my PFTs haven't gone significantly up despite years on a study drug that showed positive movement for others. But I'm a positive person so I focus on what has gone up:
I certainly don't speak for all CFers and not all CF care teams are the same. And I would be remiss if I didn't say how much I love and respect my CF team. They are dedicated and serve as an incredible resource for me. Many of them dedicate their lives to helping develop care plans and treatments for our disease. I trust they have valid reasons for using PFTs as the benchmark. It's too bad quality of life can't be measured with a hand-held device.
My health, well-being, and life are so much more than my PFTs. You can't measure the feeling of accomplishing a goal, making a new friend, or watching a loved one succeed. You can't measure having hope for the future. And you can't possibly measure the feeling I get when I think that maybe I should be saving for retirement. After all, PFTs can't measure that.
Join the conversation on Facebook.
Adult with CF
Kelsey was diagnosed with CF at age 10. She is a proud graduate of the University of Northern Iowa, with a master's degree in nonprofit administration. She now works full-time as a Member Programs Manager at a not-for-profit life insurance organization. Kelsey has chaired the Great Strides walk in the Iowa City/Cedar Rapids area for six years and will serve as the Iowa Great Strides Ambassador this year. In her spare time, she volunteers with a variety of local organizations. She loves chocolate, yoga, baking, and watching "Parks and Recreation." Kelsey lives in Iowa with her husband and two dogs. You can contact Kelsey at email@example.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