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.
Deciding what activities are safe enough for my family has been daunting during this pandemic. But with CF, I'm reminded that I've been doing this for years and I'm grateful for a tool to help me think through my decisions and make the best choices for my family.
October 8, 2020
Hitting the Reset Button on My Life Because of Trikafta
Disability is a Reinvestment, Not a Defeat
Should we do this? Can we go there? Is this safe? What's best? Is it too risky? These are the questions I have been asking myself since COVID-19 hit our world. Decision-making seemed slightly easier when schools and businesses were closed. I didn't have to re-evaluate my family's choices so frequently. But, now that cities have reopened, I've had to manage ever-changing CDC recommendations
with balancing my family's physical and mental health.
Don't get me wrong, I'm grateful things have opened up again. I'm just finding this new makes it harder to decide what's best for my family.
At the height of my stress, a dear friend who is also a mother of a child with CF reminded me, "You know we're experts at risk-benefit decision-making, right? We've been doing this for years." I took a deep breath. She was right. From the moment I brought
my child with CF home from the hospital, I have had to evaluate the risks and benefits of our family's decisions daily. Making decisions in light of COVID isn't much different from making decisions in light of CF; it just feels like the stakes are
Fortunately, there are two things that help me find peace in the midst of decision-making during COVID:
We know exposure risk to COVID-19 is higher when you're around more people and for longer periods of time. So, I placed each of my family's potential activities on the grid, based on the risk from the number of people we'd be around in that environment
and the length of time we'd be spending with them.
While this is what my personal decision-making box looked like for my family, others might place these same activities in completely different places. And that's ok. We all have different lives and needs to manage, and those can change over time. Although
I placed these activities in this location in October, I might very well place them in different places next month, depending on what we know about COVID and how my family is doing emotionally and physically at the time.
You can print a blank copy of this grid to use to plot your own situations.
Things with COVID keep changing, so my decisions must adapt. For example, I recently chose to take a trip to a state that has strict mask-wearing rules. I traveled with a friend who was willing to quarantine before our trip. Later this month, we're planning
to trick-or-treat, but only in areas with few trick-or-treaters and only to the homes of people we know personally who will commit to keeping us safe. And right now my children play with friends in the neighborhood, but only outside.
While finding peace in the midst of making decisions can feel daunting, it does help to remember that I'm an expert at decision-making in the face of a changing health condition.
I do it with CF all the time. I can do it with COVID too. Rarely is there a "right" or "wrong" decision. Instead, it's risky versus less risky. I'm grateful for tools that can help me think through my decisions and make the best choice for my family.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Mother of child with CF
Breck is a mother of three children, including Bennett, her 10-year-old with cystic fibrosis. They live in Texas, along with their dog, Jellybean. Breck co-leads the Cystic Fibrosis Learning Network and previously chaired the Cystic Fibrosis Foundation's
Patient and Family Research Advisory Council. Breck regularly blogs about her family's CF journey at initforbennett.com.
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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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