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.
Germs are everywhere, but there are things you can do to reduce your risk of getting sick. The following tips are intended to keep you informed so you can make the best decisions for yourself.
The following recommendations are based on the infection prevention and control guidelines for cystic fibrosis.
Germs can spread as far as 6 feet (2 meters) through droplets released in the air when you cough or sneeze.
Stay at least 6 feet away from others with cystic fibrosis and anyone with a cold, flu or infection in all settings, both outdoors and especially indoors, such as at school or work.
For people with CF who do not live together, avoid activities that may put you in close contact with others with CF or anyone who is sick. Some examples of activities to avoid are:
You can catch and spread germs when you touch something with germs already on it, like a doorknob or handrail, and then touch your eyes, nose, or mouth.
Wash your hands with soap and water or clean them with an alcohol-based hand gel. Encourage your family and friends to keep their hands clean as well.
Everyone should wash or clean their hands:
You can spread germs to others when you cough or sneeze. Germs can remain in the air on tiny droplets -- ready to be breathed in. They can also remain on surfaces long after you've coughed or sneezed on or near them.
Use a tissue when you cough or sneeze. Throw the tissue away immediately, then wash your hands with soap and water or clean them with an alcohol-based hand gel.
If you don't have a tissue, cough or sneeze into your inner elbow. Then, immediately was your hands with soap and water or clean them with an alcohol-based hand gel.
It is important to always clean and disinfect your nebulizer, because you can breathe in germs through your nebulizer and risk developing a lung infection. People with CF should have their own nebulizer and perform respiratory treatments in separate rooms to avoid spreading germs.
After each use, clean and disinfect the nebulizer by following the CF Foundation's recommended nebulizer care. Watch the webcast, "Nebulizer Care in the Home."
There are two disinfecting options: heat and cold methods. Be sure to use a method that is permissible by the manufacturer.
After each use, clean and disinfect the nebulizer by following the CF Foundation's recommended steps for nebulizer care. Watch the video, "Cleaning and Disinfecting Your Altera or eFlow Nebulizer. (This video is also available in Spanish.)
In addition to following the disinfecting instructions provided with your specific nebulizer, keep the following in mind when disinfecting an eFlow® technology nebulizer:
Germs can remain on surfaces of common objects, like straws and utensils, for hours. When you touch something with germs already on it, you can pick up and spread those germs.
Avoid sharing items that can come in contact with saliva or other body fluids. This is particularly important for respiratory equipment like nebulizers and airway clearance devices. People with CF should have their own nebulizer and airway clearance devices.
Some germs can hide in soil and be carried on dust and dirt particles. You can get these germs if you breathe them in or transfer the germs by touching your eyes, nose, or mouth without first washing your hands.
Guard against these germs by limiting time spent doing activities that would put you in frequent contact with dust and dirt, like:
Letting your school or workplace know you have CF is a personal decision. You do not have to disclose this information, but enlisting the help of your school or workplace can make it easier for you to keep a safe 6-foot distance and to minimize contact with others with CF.
If you attend school or work in the same setting with another person with CF, educate the school administrators or your employer about CF and work with them on ways to reduce the risk of getting and spreading germs. Reducing this risk among people with CF, as well as other students and staff, will help everyone stay healthy.
Vaccinations help your body protect itself from germs, like the flu virus, which are especially dangerous for people with CF.
Help your body guard itself against germs by staying up to date on your vaccinations. Encourage your family and friends to also get vaccinated to reduce the risk of spreading germs.
For a list of what vaccinations to get and when to get them, talk to your care team at your next clinic visit.
You can also visit the Centers for Disease Control and Prevention's website.
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