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.
Even though it was scary, I made attending medical appointments during the pandemic a priority.
Maura Corcoran Wozniak
April 23, 2021
How I Stayed Positive With CF
Learning to Process Grief
One could say growing up with cystic fibrosis prepares you for what life would be like during a deadly pandemic. For your average person, this new “normal” is very different from your average day. But for someone like me, a 42-year-old mother and wife living with CF who has undergone two double-lung transplants, the notion of physical distancing, washing your hands, having hand sanitizer on you at all times, and wearing a mask in certain situations was nothing new. Fortunately -- for me and my family -- this new normal was status quo.
With that said, navigating through this pandemic has been nerve-wracking, especially when it comes to maintaining my health. Going to doctors' appointments and hospital stays weren't what they used to be. The new procedures and protocols put in place at each hospital were necessary but not easy at times. For me, that meant neither my husband nor my 12-year-old twins could accompany me.
CF check-ups were ok. Typically it was a quick in-and-out visit, but when it came to procedures like bronchoscopies and surgeries, it got overwhelming. I consider myself pretty good at navigating hospital visits and stays, but when a loved one can't be with you, it can be stressful. The stress was even more so when I was hospitalized for a week last fall.
I often asked myself, “Could the appointment or minor procedure wait for another few months?” In the end, I had faith that each center I visited had the proper policies in place to keep their patients safe. I also continued to rely on my own doctor's advice.
There were times when virtual appointments were available but -- being a CF and a transplant patient -- many things, such as bloodwork and X-rays, couldn't be done in the comfort of my own home. Given my health history, I didn't want to risk waiting until the pandemic ended.
I knew I needed to continue to be diligent in managing all aspects of my health during the pandemic, including CF-related diabetes. I knew that when we got to the other side of this pandemic I needed to make sure I was healthy.
Therefore, I continued seeing my doctors -- not so much in the beginning when things were shut down, but certainly when things started opening back up. During the early fall, I had at least two doctors' appointments each week. It was a lot but I had many aspects of my health to manage, especially as I continue to get older and taking immunosuppression medications.
CF never defined me but my health was always my first priority. This mindset was more true when I got married and became a mom. How can I take care of my family if I don't take care of myself and stay healthy?
This year has been tough on so many people. But, when you are considered high-risk, the odds are already stacked against you. I couldn't afford to get COVID-19. I am living with a 60% lung function and have already been hooked up to ECMO (extra-corporeal membrane oxygenation), a vent, and have been intubated. You name it and it has happened to me. I will not risk taking any chances of getting this deadly virus because I don't think I would come out the other side.
I've already lived through two transplants and stared down death's door. This pandemic wasn't the time to take any chances. It has been a time to play it safe. I knew I had an obligation to myself and my family to take care of my health and stay on top of things. I also couldn't risk putting off any doctors' appointments because my life literally depends on them.
In fact, if I had put off going to see an endocrinologist, I would not have been diagnosed with CF-related diabetes and who knows how I would be feeling now? I also wouldn't have been able to begin taking Trikafta® if I stopped getting my weekly bloodwork done.
For me, all of these aspects are pieces of a puzzle that come together to ultimately keep me healthy so I can live each day to the fullest. If that means continuing to go my medical providers in-person during a pandemic I will.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Maura Corcoran Wozniak
Adult with CF
Maura is a wife and mother who has had two double-lung transplants and lives daily with cystic fibrosis. Prior to becoming a stay at home mom, Maura worked at VH1 as a manager of corporate communications, where she oversaw publicity for various series
and events as well as all public relations aspects of the company's non-profit, VH1 Save the Music Foundation. Along with raising awareness of CF, Maura is an ambassador for Donate Life in North Carolina. A graduate of Villanova University, Maura,
her husband Joe, and their twins, Elinor and William, reside outside of Charlotte, N.C.
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