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.
COVID-19 has introduced telehealth appointments to my cystic fibrosis care. I've learned that advocating for myself is even more important when my care team and I can't be in the same room.
June 15, 2020
What I’ve Learned From 11 CF Care Centers in 21 Years
Never Alone: My COVID-19 Experience
This pandemic has created so many unknowns and new realities in fighting cystic fibrosis. Like many others with CF, I've recently had to adapt to telehealth appointments.
A week prior to a follow-up appointment, I received a call from my care team that they would be conducting my appointment virtually to avoid unnecessary risk from COVID-19. Once they confirmed that I was an active member of my hospital's online patient portal and ensured I would
have access to a camera and microphone, I was set to meet with the team online. Fortunately for me, I have been using the necessary technology at home as part of my job. Despite being comfortable using online conferencing software, it was my first
telehealth appointment and I was a bit apprehensive about what to expect.
On the day of my appointment, I anxiously waited for my team to start the session. Once it started, one of my nurses and favorite physician sat across from me on the screen. It was different seeing them in their office and far from the traditional clinic
room, but extremely comforting to know that despite all the uncertainly of COVID-19 I have a care team supporting me.
The appointment was far more conversational than an in-person visit, and we spent much of our time chatting about how I was adjusting to quarantine and things I had been doing to keep busy. As my care team wasn't able to administer a pulmonary function
test (PFT) or listen to my lungs, the appointment was structured differently than I'm used to. At first, I felt frustrated as I just completed a round of antibiotics and
I wanted a number to confirm that my lungs were doing better. However, having CF is so much more than just focusing on a number a PFT gives you. It's listening to your body and knowing yourself. This concept isn't new to me or others in the CF community
-- I can usually tell with subtle changes in my body that I'm fighting an infection and the PFT confirms it. There is the data that a PFT or other tests tell you and there is your knowledge of yourself and your own body.
Conducting appointments via telehealth has helped remind me of the importance of both types of information when consulting with my care team. My care team was relying solely on my ability to articulate how I was feeling.
I've always strived to be a strong advocate for myself, asking questions and being honest if a new care regimen isn't working for me. Thankfully, my care team is excellent at providing patient-centered health care and listens to what I say.
As I look to future appointments, I realize advocating for myself and being open and honest with my care team is more crucial now than ever. Trust your body and what it tells you and be sure to share that information with your care team during both your
in-person and telehealth appointments.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Lydia Sand has a drive for life and refuses to let cystic fibrosis hold her back. She received a master’s in public administration in 2016 and works on a federal grant for health care workforce initiatives in Nebraska. Lydia has been a successful fundraiser
for the Cystic Fibrosis Foundation since 2001. She has been a Great Strides Ambassador for the Nebraska CF Foundation chapter, a current Tomorrow’s Leader, and involved with other efforts in the CF community. A South Dakota native, Lydia currently
resides in Omaha, where she enjoys traveling, playing in a sand volleyball league, trying new recipes, and working to keep her plants alive. Lydia shares here CF journey via Instagram at @Inspireinthesandbox.
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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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