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.
Abandoning precautions to return to “normal” will put the health of people who may be at high risk for serious illness from COVID-19 in danger.
August 31, 2020
CF Prepared Me for Isolation, But Not Homeschooling
My Faith Gives Me the Strength to Cope With CF
Unless you've been on another planet for the past few months, you know that we're in the midst of a global pandemic. At this
point, we've seen more than 150,000 deaths in our country and over half a million worldwide. Yet, more and more, I'm seeing the call for a streamlined return to normalcy. As we listen to the debate about masks, see the number of cases continue to
skyrocket, and contemplate the next steps we should be taking, there's an anecdote from my childhood that keeps coming to mind.
I had a friend who refused to drink soda after hearing about a woman who found a dead rat in her drink. My friend believed that companies recognize the possibility of rodents falling into the large vats of soda during production and, rather than wasting
product, the company arbitrarily chooses an acceptable number of rats. As long as that number of dead rats is not exceeded, the product is deemed fit for packaging and sale. For my friend, the only acceptable number of dead rodents in her soda was
zero. “Life is a game of dead rat soup,” she'd say. “How much risk are you willing to take?” This story probably seems gross and irrelevant, but bear with me and I think you'll see where I'm going.
Despite the many ways in which life has changed over the past several months, pandemic life feels eerily familiar to me. Perhaps that is because people with cystic fibrosis have always worn masks, stayed six feet apart, practiced cross-infection control,
and prioritized our health above all else. Operating with caution has been necessary for our survival and, because of our vigilance, we have flourished. Life expectancy and quality of life for people living with CF continue to improve, but it's taken
a lot of work to get here!
My daughter (who is almost 11) has handled the last few months with impressive grace and courage. I believe that much of her resilience comes from her familiarity with my struggles having a chronic illness. She grasps the importance of physical distancing
and wears a mask without question or complaint. She understands that as we work toward getting back to “normal,” we can do things to keep our risk low, while still finding beauty in the world. Unfortunately, many people in our lives do not share her
Currently in our town, there is a push for a full return to school without masks or distancing measures. Parents want their children to endure as little emotional damage as possible, which I completely understand. However, I don't believe that
wearing a mask or having to sit six feet away from classmates is what will cause the most profound damage. What happens when our children start bringing the virus home, potentially infecting their more vulnerable family members? How will our kids
cope with the death of classmates or teachers? How much preventable loss and heartache will they experience if we rush too quickly to get back to normal? This is the kind of emotional trauma I deem worthy of consternation.
A popular suggestion for settling this dilemma is that, if they are “scared,” high-risk individuals (like me) should completely self-isolate while the rest of the world hurries back to normal. There are multiple flawed points to that logic, but perhaps
the most contradictory is this: I do not exist alone in this world. My partner is an essential employee and has continued to work throughout this pandemic. My child has the very same social and educational needs as her peers.
Removing myself from society as a measure of protection only works if my family isn’t exposed while they’re out in the world. For that to happen, the general public must also be taking significant measures to slow the spread of the virus. If the
vulnerable population makes all the sacrifices and concessions, we are still at risk. But when everyone is willing to accept responsibility and collectively tackle the issue, risk goes down for everyone.
As a high-risk individual, as a parent who wants the best for my child, and as a human being who cares about others, I’m saddened by much of the discourse taking place. The push to get back to normal without consideration for the most vulnerable among
us is deeply concerning. As we consider what our next steps should be as a society, I keep wishing that more people knew about my friend’s “dead rat soup” theory. If you knew that several rats had fallen into a barrel of soda, would you still drink
it? What if it was just one rat? Still no? How many rats are acceptable? How many could you tolerate?
Now instead of rats, imagine human lives in the context of our current global health situation. If you knew that a certain activity meant risking a life, would you do it? How many lost lives are acceptable? If “returning to normal” too quickly will result
in people dying, how many lives are you willing to jeopardize? Who in your life would you be willing to sacrifice?
Over the last several months, the overall message we’re hearing is that the vulnerable population is expendable; our lives are a sacrifice worth making so others aren’t subjected to the unbearable horror of masks, social distancing, and other protective
measures. On the contrary, our lives are enormously valuable!
There is much to be learned from people who have successfully prioritized health and mitigated risk while continuing to live full, beautiful, fulfilling lives. We are living proof that it doesn’t have to be an either/or situation.
I truly believe we can collectively take responsibility, protect the most vulnerable, AND emerge from this pandemic with relatively little emotional trauma.
Just like the rest of the world, I’m anxiously awaiting a return to normalcy, especially for the sake of my child. However, when it comes to human lives, I believe there is even less room to compromise than there is when playing a game of dead rat soup.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Jenny was tested and diagnosed at birth following the diagnosis of her two older sisters. Jenny is passionate about raising funds and awareness for cystic fibrosis, and she helped form the foundational Patient and Family Advisory Board at her CF center.
She was chosen as a recipient of the Vertex All in For CF Scholarship twice as she pursued a degree in psychology, which she earned in 2019. Jenny lives in central Utah with her daughter, fiancé, and an ever-growing zoo of animals. Jenny writes about
motherhood, living with cystic fibrosis, and more on her blog Lungs N' Roses and she can be found on Instagram.
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