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 created a lot of emotional and financial uncertainty among people with cystic fibrosis and their families. Here are some tips to help with some of those challenges.
Susanne’ Muenzel, LCSW
July 23, 2020
CF Knocked the Shyness Out of Me
The Grief of Living With CF Needs to Be Felt
In this time of uncertainty, the one thing that I can say for sure is that none of us imagined that this year would be going like this. As a country, we went from a two-week social distancing request, to a stay-at-home request, to mandated orders … and we are still facing unusual circumstances more than three months later. Providers and care teams are now experiencing some of the “social distancing” our CF patients and families endure every. single. day.
As we all take on this new normal, life looks a bit different. Some are out of work. Some are out of school. Many are staying home 24/7 with nothing to do and nowhere to go. However you embrace the current state of the world - fear, hope, strength, anxiety - now, more than ever, we have to be willing to acknowledge and express our needs.
How is your stress level? How is your anxiety? Have you been feeling sad or depressed? Do you have enough food for you and your family? Do you have money to pay the bills?
Each of the families I have contacted have had different needs during this time. Some parents appreciated hearing a familiar voice on the other side of the phone. Some needed help with applying for pandemic unemployment. Some needed letters to provide to their employer verifying that they have a child at home with a serious health condition. And some needed help buying food or paying bills. As I heard the needs, I worked on providing support, connecting families to resources, and sharing tips.
One mom I spoke to felt stuck between working to make money, which she needed to pay the bills, and exposing her child to COVID-19. We talked through all the recommended precautions, which her employer did not follow. We discussed her priorities, keeping her family safe from illness, and next steps. She applied for unemployment, but it was denied as she did not meet the qualifications. She then applied for pandemic unemployment, which was approved. She also received a stimulus check. As none of us know how long this pandemic will last, I suggested making a plan for using the money that she received to pay ahead on her bills. And that is what she did! She paid three months ahead on her car insurance, electric bill, and rent. This has given her peace of mind as she knows the bigger bills are already paid.
There are so many who have been impacted by this pandemic. More families need help right now than ever before.
Reach out to your cystic fibrosis care team and have an open and honest discussion with what you and your family are currently experiencing. There are several agencies that are providing assistance during this time.
Here are a few helpful tips:
Stretch your stimulus to the max. Use your stimulus payment to cover large expenses before they're due.
Make a financial plan (budget) for your paychecks or unemployment payments.
Find the resources to help you catch up on any back payments.
Stretch your food budget.
Ask your CF team.
The Food Research and Action Center (FRAC) is an organization that works to end poverty-related hunger in the U.S. I encourage you to check out FRAC's COVID-19 page for updates, statements, and resources on actions to address the food security, public health, and economic impacts of the COVID-19 emergency. Explore FRAC's Pandemic-EBT page, which tracks this new federal program across the country.
Susanne’ Muenzel, LCSW
Pediatric CF Social Worker
Susanne’ started working with the cystic fibrosis center in Augusta, Ga. in September 2012, shortly after the introduction of Kalydeco®. She is very passionate about helping patients and families develop solutions to their problems and balance
CF care with everyday life. Susanne’ serves on the Access Steering Committee and the Food Security Committee with the CF Foundation. She is also a co-facilitator for the CF Social Work Mentor Program. In her spare time, Susanne’ loves to learn, travel,
and experience new things.
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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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