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.
Because of the threat to my health caused by COVID-19, I had to give up my dream job as a nurse practitioner. Now I am asking for paid leave expansion.
July 29, 2020
Twin Sisters With CF Find Support in Each Other
CF Knocked the Shyness Out of Me
It's a Thursday and I'm sitting in my home office. Since the onset of COVID-19, I've spent many days in this small space doing work that lets me stay safe at home. The flexibility afforded to me by my workplace, a Veteran's Administration (VA) hospital,
which allows me to do odd jobs at home due to my cystic fibrosis has been a blessing. Living with cystic fibrosis may put me at a greater risk for adverse complications from COVID-19. Going to work during a pandemic was not an option.
My accommodations are coming to an end, though, despite letters from my CF doctor detailing the risks that COVID-19 poses to
me. I've been given a date I'm needed back at work. It's been a struggle these past weeks, deciding between returning to the VA or to remain at home. Either way I go it won't be an easy road ahead. I've finished an email to my employer and I'm nauseated
just thinking about hitting the send button.
I always knew I wanted a career where I was hands-on helping people. For the past 16 years, I've been in the nursing field, initially as a nurse and then as an acute care nurse practitioner (NP) for the past six years. I've seen people on their worst
days, celebrated with patients taking their first steps after a stroke, held the hands of people passing on from this life so they wouldn't die alone, and worked tirelessly to save critically ill patients. To say it's been fulfilling would be an understatement.
Recently, I made a move to a new hospital and started working with veterans -- I loved it! I felt like I had finally found what my career had been missing. I truly envisioned myself staying there for the rest of my career to serve that population. Then
Endless questions were running through my head during the weeks I grappled with the decision to return to work or stay safe at home. What if I contracted COVID-19, only had mild symptoms and it turned out to not be a big deal? What if I went back to work
and didn't even become infected with the virus? Was I just being overly dramatic about all of this? Even though this is my dream job, is a paycheck worth risking my health over? I sat down and made a list of reasons to return to work versus stay home.
I was desperate for anything that might help guide me in the right direction.
COVID-19 has the real possibility of wiping out everything I have worked so hard for throughout my life. How many hours have I spent on vest and breathing treatments, running, attending doctor appointments,
or staying active even when it was the last thing I felt like doing? Even though CF is a progressive disease and ultimately out of my control, the aspects I can take control of,
Most of you reading this know all the behind-the-scenes work that living with CF requires. I've fought hard to be where I am today -- with my health as well as my career.
During my struggle, my support system was there every step of the way. I've got to say, I have an amazing support system surrounding me -- my wonderful husband John, my mom and brother, friends so close they are practically family, and a supportive
CF care team. All of them listened to me talk this through. More importantly, they all gave me the space to come to my own decision. I hadn't realized how important that small detail was until afterwards. At
the time, the only thing I wanted was for someone to tell me the correct thing to do. Now looking back, I know how crucial it was that I made the decision for myself.
I sent the email. I lost a job I loved and that provided income and health insurance. I'm filing for unemployment and looking for work I can do remotely. I'm applying to organizations for assistance with (astronomical) COBRA (Consolidated Omnibus Budget
Reconciliation Act, which enables the continuation of health benefits) payments. But at the end of the day, I still have my health and I'm so thankful for that.
Many of you in the CF community are facing similar situations or worse. My story definitely doesn't stand alone. You don't know how much I wish that wasn't true. It's been a challenge to say the very least, as some of you likely know from first-hand experience.
This is why it is incredibly important that paid family and medical leave be expanded for those with underlying conditions, like CF, during this pandemic. With expanded paid leave, I may not have had to make this decision.
I'm looking toward the future now. I'm looking forward to the day when I can go on adventures with my husband, meet my friends for tacos, and travel to Kansas to see my family again. There have been good days and bad days the past weeks since losing my
job, but not once have I regretted the decision I made. But I didn't have to make this decision, and with expanded paid leave, many others in the CF community wouldn't have to choose between their health and
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Kat graduated from Vanderbilt University in 2013 with a master’s degree in Adult-Gerontology Acute Care Nurse Practitioner (NP). Since then, she’s been practicing as a critical care NP in the Nashville area. Kat has participated in several cystic fibrosis research studies. Throughout the week you can find her running, reading, enjoying walks and hikes, and eating chips and queso. She will pick up any cat she finds on the street. Her family jokingly refers to Kat and her husband as the Carroll Cat Rescue, much to her husband’s chagrin. She lives in the Nashville, TN area with her husband John and, of course, their two cats.
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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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