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.
I was prepared to experience side effects when I was vaccinated against COVID-19, and -- although they were significant to me -- I knew that it was my immune system strongly responding to the vaccine.
February 26, 2021
How I Got My Life Back
Talking to Our Son About His Baby Sister’s CF
For the past nine months, I, like everyone else, was anxiously awaiting U.S. Food and Drug Administration (FDA) authorization of an effective COVID-19 vaccine. FDA authorization is not some foreign concept to a lot of us with CF, as we have waited eagerly
for the last five years each time a new cystic fibrosis transmembrane conductance regulator (CFTR) modulator was up for review. We cheered, cried, and breathed a huge sigh of relief each time a new CFTR modulator was approved.
For me, the Emergency Use Authorization of two COVID-19 vaccines in December 2020 gave me the same sense of relief as the approval of a new CF treatment. Since May, I have been working at my local health department, first as a COVID-19 case investigator,
and now as the COVID-19 epidemiologist. I have worked countless hours and shed countless tears over the situation in my area and what much of the country has experienced this past year.
But with the authorization of two vaccines, the tears of exhaustion turned to tears of joy.
When it became clear that there was going to be at least one vaccine by the end of 2020, I reached out to my CF care team to ask them two questions: Should I get a COVID-19 vaccine? If yes, which one should I get? My CF doctor responded quickly with,
“Whichever one you can get first.”
I was fortunate to be able to receive my first dose of the Moderna vaccine on December 23, 2020 because of my role at the health department. I cried tears of relief as I sat in that chair to receive the injection. A light broke through all the darkness
of the last year when that needle went into my arm, and I was able to fully exhale. Over the next two days the only side effect I reported was a sore arm -- a very sore arm. But it was worth it.
Then in January I received the second dose around 3 p.m. on a Tuesday. After waiting for 15 minutes, I went back to work. That evening, I fell asleep on my couch and when I woke around 10 p.m., I had some chills and body aches, but I just crawled into
bed and didn't think much of it. I awoke at 3 a.m. with a fever over 102 degrees, chattering teeth, more body aches, and rigors. I experienced these symptoms for about 36 hours, until around 3 a.m. on Thursday morning, when my fever broke. Throughout
the day on Thursday, I rested, making sure I stayed hydrated and my fever didn't return. I was back at work Friday morning.
I am not going to try to underplay the symptoms I had. I told my husband that if I couldn't have pinpointed the reason for these symptoms (the vaccine), I would have been calling my pulmonologist and begging to be admitted to the hospital. I also couldn't
help but think, “If this was COVID and not the vaccine, I would be terrified right now.” Some people may read these symptoms and think that they shouldn't get the vaccine.
No one likes feeling crummy, but I am thankful that my immune system was strongly responding the way it is supposed to!
As I reflect on the past year, I am astonished at how quickly science has moved to develop these vaccines -- within a year -- but I shouldn't be. The scientific community has developed several new lifesaving drugs for people with CF recently, but this
year the whole world got to experience the benefit.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Meagan lives in southwest Virginia. She has a doctorate in Health Promotion and Disease Prevention research and a master's degree in nutrition. She is also a certified health education specialist. Currently, she is serving her local health district as
the COVID-19 epidemiologist and is an assistant professor at a regional state university. Meagan serves the CF community as a member of the Ear, Nose, and Throat Guidelines Committee and Teen Connections, and she actively participates in research
trials at her CF care center. She is obsessed with her two mastiffs, Mya and Warren, and enjoys traveling with her husband, Ches.
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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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