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.
Want to know why getting a flu shot is so important? I ignored my early flu symptoms, which ended up spoiling the holidays and leading to an exacerbation.
October 20, 2016
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Why get a flu shot? Well, for a person with cystic fibrosis, I can give you lots of reasons. To start, if you care about a person with CF or if you have CF, you should know that getting the flu can be a tough blow, possibly life-threatening.
In December 2015, after completing my last business trip for the year, I flew home from New York City to meet my family, who were visiting me in Atlanta for the holidays. I was looking forward to spending precious time with them since we only see each other a few times per year. The morning after I arrived home, with my family awaiting me for breakfast, I didn't feel so well. I thought maybe it was just that I was exhausted from the week and relieved to have a couple weeks off the road. I missed my mother's homemade breakfast, which is always a scrumptious spread.
After making myself get out of bed, I went through the day feeling badly … achy and sweaty, and had no appetite, which is definitely not like me. As the week progressed, each day, I got worse. My coughing increased significantly, as well as my mucus production, not to mention how quickly it was obviously laden with infection (dark green). I continued to run a low-grade fever and felt horrible but tried to subdue my illness as I didn't want to worry my loved ones.
Unfortunately, as I continued to worsen, I missed out on valuable time with my family that I will never get back, as I slept most of the days to come and missed most of the family meals.
Once my family headed home to Florida, I consulted with my husband and we decided I should go to the hospital (actually, my husband wanted me to go days before … the truth is that I finally gave in). Once admitted, I learned I had the flu. I spent the better part of the next week in the hospital with a PICC (peripherally inserted central catheter) line for multiple intravenous (IV) antibiotics. I increased my breathing treatments, used my vest more frequently too and took other medications like Benadryl to offset the allergic reactions to the antibiotics, which then caused me to sleep a lot.
As a result of my extended hospital stay, you can guess where I spent New Year's Eve, which was a complete bummer. My husband and I had plans to head to downtown Atlanta and watch the 2016 Annual Peach Drop. Instead, we laid in my hospital bed and watched it on the television. Not a great way to spend New Year's Eve!
I was sent home on IV and oral antibiotics for another two weeks with eight doses per day. If you have ever had strong doses of antibiotics, then you know the havoc they wreak on your digestive system, causing diarrhea and stomach pain. I was constantly worried about getting an infection in my gut like Clostridium difficile or C. diff, which in some cases can be deadly.
After completing the long round of antibiotics, it took another couple of weeks to get back to pre-flu stamina and feeling 100 percent. Basically, I was knocked out of commission for a month (Reminder: there are only 12 of them in a year, so this is pretty significant!).
So, why get a flu shot? If you don't get a flu shot, you take a chance of getting the flu virus and spreading it to your loved ones, your coworkers or innocent bystanders on an airplane or subway. By catching the flu, I was also at risk of contracting other viruses or bacteria by being exposed to sick people in the hospital or developing C. diff. Most important, I missed valuable time with my family that I treasure beyond words and can never get back.
Please, please, please get a flu shot … if not for yourself, do it for your loved ones, friends and coworkers, whether or not you are blessed with CF!
Adult with CF
Lisa was diagnosed with CF at 5 months old. She grew up as the baby of eight children, but the only biological child between her parents. Lisa has led a mostly healthy life, with some admissions to the hospital on occasion. Lisa is an accounting consultant with a big-four accounting firm and is required to travel for work (75-100% of the time). A certified public accountant, she has a bachelor’s degree in accounting and an MBA with a concentration in controllership. Lisa and her husband, Michal, live in Atlanta, GA with their miniature dachshunds, Jackson and Augie. You can contact Lisa at firstname.lastname@example.org.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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