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.
Influenza or “the flu” is a highly contagious respiratory illness that is caused by a virus. For people with cystic fibrosis, getting the flu may cause a worsening of symptoms and lead to a faster decline in lung function.
In people with CF, the flu can lead to a severe lung infection, like pneumonia. If you have the flu, you may feel worse than you do with a typical lung infection or pulmonary exacerbation. Flu symptoms include:
Contact your CF care center or doctor's office as soon as you feel flu-like symptoms. Antiviral medications used to treat people for the flu are most effective if taken within 24 hours of the start of symptoms. These drugs may help lessen your symptoms or how long you are ill.
Like many germs, the flu virus can spread by direct and indirect contact and through the air. To reduce the risk of getting and spreading the flu, it is important for you and everyone around you to follow infection prevention and control practices like hand washing and getting vaccinated.
The flu vaccine or “flu shot” can reduce the risk of getting the flu by helping the body fight off or increase its immunity to the flu virus.
It is best to get the flu shot early since it can take around two weeks after vaccination for the body to build up its immunity to protect itself against the flu virus. The best time to get the flu shot is in September through October, but getting vaccinated in December or January is still helpful as flu season can last until spring.
Did you know that when more people receive the flu shot, there is a better chance of reducing its spread? Learn more.
It is important to get the flu shot every year, since flu viruses are always changing. The flu vaccine cannot prevent all types of the flu virus, but it remains the best way to reduce the risk of getting the flu viruses that are most likely to make you sick in the current flu season.
People with CF can usually get their flu shot at a CF Foundation-accredited care center and through primary care providers. Talk with your CF care center to find out whether it has the vaccine available. You can also find the closest place to get a seasonal flu vaccine from the Flu Vaccine Finder.
The flu shot does not give you the flu because the viruses in the flu shot are killed (inactivated). The risk of the flu shot causing serious harm is very small. However, like any vaccine, you could have mild side effects, which may include:
If these problems happen, they will begin shortly after the shot was given and usually last one to two days. However, if you are not feeling better or start to feel worse, call your doctor.
If you do get the flu, you should try and stay home for at least 24 hours after your fever is gone. The fever should be gone without using a fever-reducing medicine, like acetaminophen (brand names include Tylenol®). A fever is defined as 100.4 degrees Fahrenheit or 38 degrees Celsius or higher. Children should not take aspirin if they have the flu or any viral infection.
Since the flu is highly contagious, encourage everyone around you, especially family members or people who live with you, to also get vaccinated to reduce the risk of getting and spreading the flu virus.
Children ages 6 months through 8 years may need two shots of the flu vaccine annually to fully protect them against the flu. Experts generally recommend four weeks between the two shots. However, ask your doctor if your child needs one or two flu shots and how far apart they should be given.
The flu vaccine spray (brand names include FluMist®) is sprayed into the nose and contains live but weakened flu viruses. The safety of the flu vaccine spray has not been established in people who have a lung disease like CF or asthma. The spray is only approved for people ages 2 to 49 years of age who do not have a history of severe allergic reaction to any component of the vaccine.
In addition to getting the flu shot, the following recommendations are intended to help people with CF reduce the risk of getting and spreading germs, like the flu.
For seasonal flu information, visit the CDC's website.
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