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.
I went the first 17 years of my life without being hospitalized, but CF caught up to me when I had my first “tune up” last year. As much as I thought I knew about what it would be like, I wasn't prepared for how that first hospitalization would feel.
July 2, 2019
Jumping Over My Fear to Join a CF Clinical Trial
A Mother’s Unconventional Love
For many people with cystic fibrosis, doctors' appointments, hours of treatment, and hospitalizations are the norm. Growing up, I went to clinic every three months and have always been strict about my treatments,
making sure I do each one fully and well. I want to say that led to some of my success in going so long without being hospitalized. Ever since I was a baby, I have never experienced lung problems as much as the digestive issues. Unfortunately,
this past December, it was time for a “tune up.”
Since August of last year, I had a horrible cough that kept producing sputum no matter what antibiotics I was taking -- I took so many different ones (and even tried some twice)
and nothing was getting rid of it. I went into the hospital on a Wednesday and ended up staying for 10 days.
As soon as I got into the hospital, my physical health declined. My pulmonary function tests were in the 50 percent range when they were typically in the 80s and 90s. My cough was coming and going and my whole body felt weak. My stay in the hospital was
a lot longer than expected, doctors were confused about why I wasn't getting better, and my symptoms got worse. Those 10 days took so much out of me, both emotionally and physically, and I
didn't even realize it.
Once I was released from the hospital, I went on a different inhaled antibiotic that helped another germ I had. My cough went away, and I was physically feeling a little better for a couple weeks. But I started to struggle mentally after that hospitalization.
I started telling myself that I couldn't do things and I was telling myself I was weaker than I was. I felt bad and like I couldn't do enough to help myself.
Eventually, I felt my courage build back up. I started physical therapy because my body had become hypersensitive in the hospital. Doing physical therapy at that moment helped me start to gain my strength back. I
started going to the gym with my mom and walking on the treadmill for thirty minutes every other day. My physical strength started to come
back slowly, and with it, I started believing in myself more. Today, even though I am not where I used to be, I have come a long way since starting physical therapy.
Regardless of why you're being admitted, hospitalizations aren't a fun thing. My first hospital visit was nothing like I expected. Because I had no idea what to expect, it caused me to feel something I'd never felt before. CF makes me feel alone -- no
one understands what having cystic fibrosis is like unless you have it. And, when I was in the hospital and my physical and mental health were getting worse, I felt even more alone.
But I knew I had people by my side. I am forever grateful for the amazing nurses I had, the child life specialist who made sure I was never bored, my awesome CF team that checked in with me every day and made sure I was doing OK, and my family and friends
who made me feel loved and not alone.
CF is such a scary thing especially because it affects everyone who has it so differently. We all have our own battles with the disease, some are just different than others. I feel incredibly lucky that I went 17 years without needing IV antibiotics --
and I still feel lucky to this day. Although it's easy to look at the negative things, I always try to stay positive. No matter why you're in the hospital, I encourage every single person to find something that makes you happy.
I know this was my first hospitalization, but if I ever have to go back, at least I will be better prepared and know what to expect. For anyone else who is struggling with going into the hospital, remember: We all fight this battle together and every
single person in the CF community is rooting for you.
Young adult with CF
Zoey is a student at Washburn University in Topeka, Kansas. She plans to major in psychology and minor in music. Zoey has been playing the violin ever since she was 7 years old and has never let her cystic fibrosis interfere with her passion for music. Zoey also enjoys eating pizza, hanging out with friends, and shopping at Target. While cystic fibrosis has had some negative effects on Zoey, she never gives up on her treatments and always maintains a positive attitude. She likes being a good role model and hopes her positivity helps others.
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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.
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