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.
Thanks to COVID-19, a work furlough forced me to slow down the pace of my life and I'm okay with that. Here's how I've let go of needing to be productive during this time.
June 30, 2020
Humor Is the Best Medicine for My CF
Being Black in the CF Community
If you would have told me by March 2020 I'd be off work due to COVID-19 and by May I'd be furloughed, I would have laughed out loud! I have been working in administration/patient education full time at a major hospital since 2013. Working full time and the strict daily routine I had to adhere to, became second nature to me. During the workweek, I had 45 minutes each day that was not “planned” -- my free time. This meant washing dishes, cleaning and sterilizing treatments, or relaxing with a book or favorite show.
At first, the quarantine was cool. Who wouldn't want some time off from work? Quickly, I started to get antsy -- what could I be doing with my time to keep me mentally and physically busy, especially since I was choosing to stay at home and not visit any establishments?
I know there is enormous pressure to be ultra-productive during quarantine, but I think it's all about finding balance.
No, you don't need to learn two languages or learn how to sew, nor do you need to become a master woodworker. You don't need to keep up with the latest trends on TikTok and Instagram. There is no shame in watching movies and chilling, but it's also just as important for your mental and physical health to be active and get off the couch! This will look different for everyone but it's all about finding hobbies that you enjoy. What makes you happy? You may have more time then you did before; what have you been waiting to do that you couldn't before? I realized that during this time of furlough I was left with so much time to do things that I simply didn't have time for.
Here are a few things that I've done to keep my mind and body busy:
I baked: I made my own bread, baked, and cooked less than desired before the quarantine due to my work schedule. Since being off work, I have tried many new recipes -- most of which have turned out delicious!
I gardened: I finally took up gardening! I started a few seeds indoors once I knew I had to be off work due to COVID-19. I recently transplanted the seedlings outside and am hoping to grow a plethora of tomatoes and jalapeno peppers! Tip: pulling weeds isn't for the faint of heart, such hard work, but a great workout!
I made exercise a priority: I worked out six days a week before the quarantine, but I rushed through the exercise, trying to complete it as soon as possible to fit it into my day. Now that I have more time, I've made my exercise a priority. I have finally been able to go on longer, more frequent bike rides with my husband and often I add extra workouts, such as yoga or a walk around the neighborhood. My mom sent me a larger kiddie pool and it's been a great respite from the Michigan summer sun, it's my new favorite reading spot!
I slowed down: Don't forget to slow down and smell the flowers! This slower, yet more active lifestyle has made me realize that I was working so hard to continue the life that I thought was “normal.” Being in my early 30s with low lung function, working full time after getting a graduate degree seemed like the “right thing to do.” But, I realize that there is so much LIFE outside of working full time. My life used to be meticulously planned; now I can pull weeds, bake bread, cook, or exercise on my own schedule.
Could I sustain this lifestyle forever? Maybe, maybe not. I do miss work and helping other people. But, while we have COVID-19, I will happily wait it out from my kiddie pool!
While I breathe, I hope.
Interested in sharing your story? The CF Community Blog wants to hear from you.
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.
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