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.
Stress, lack of sleep, and constant interruptions make spending time in the hospital physically and emotionally exhausting. But for me, it's just as difficult to come home from a hospital stay and get back to “real life.”
December 15, 2017
Watch the Vlog: The Koerners Share Their Experience With IVF
I Have New Lungs and I Still Have CF
There is no place like home, especially after a long, grueling two-week hospital stay! Hospital life is tough, and it can be so frustrating. Sitting in a room for two weeks and then returning to semi-normal life can be such a daunting task. For me, the transition from hospital life to real life is just as (if not more) exhausting as going in.
I'm not sure how, but transitioning back into real life is always so hard and so stressful. Sleep and nutrition are such important components of healing and, sadly, both of those are really hard to come by in the joint.
Hospital life is so busy and exhausting, and I feel like the door to my room is constantly revolving. Throw in some insomnia and, well ... let's just say I feel like I could sleep for a week when I get home. And not to mention, there's the long list of to-dos to make sure your home is as clean as possible when you get out of the hospital as well. I mean, there is no sense re-infecting yourself from the old bacteria you had before you went in. Clean sheets, new toothbrushes, new Chapstick, sterilized or new nebulizer cups, new O2 tubing, filling O2 tanks, new nebulizer tubing ... and the list goes on.
What are some of the most daunting tasks for you after an admit?
CF is definitely something you can't fight alone. Having a support system is so important when it comes to facing any battle, no matter the size. I am so appreciative of all the love and support I get while I am in the joint. People are always so willing to visit, bring me anything I may need, and call to check in on me when I am admitted -- and I couldn't be more grateful.
The support is greatly appreciated after the hospital for the first little while as well, as I attempt to transition back to real life. Sometimes I hear that after someone gets home, the support often stops or starts to fade. The reasoning behind this is the support system assumes that since you're home, everything is back to normal. But in reality, nothing seems normal at first.
My best advice I can give when you get home is to take it one day at a time ... ok, who am I kidding? It's more like one breath at a time. Take big deep breaths as you baby step back into reality. You'll eventually get back to your normal ... or at least your new normal going forward.
Breathe out Love! ❤️
Adult with CF
Somer was diagnosed with cystic fibrosis at 11 months in 1980. She tries to live each day to the fullest by keeping her hopes high and dreams big. Somer is an active advocate in the CF community who has spent her life fighting the disease alongside her parents. Follow Somer on Love To Breathe.
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