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.
Parent and Guardian Guidance
Learning that your child has cystic fibrosis can be overwhelming. You may feel sad, guilty, scared, or even angry, but you are not alone. We are here to help.
The first step in treating cystic fibrosis is confirming a diagnosis. If you or your doctor suspects your child may have CF, a sweat test will likely be ordered. A sweat test is the most reliable way to diagnose cystic fibrosis.
This simple, painless test measures the concentration of salt in a person's sweat. A high salt level indicates CF. It is important to have a sweat test done at a Cystic Fibrosis Foundation-accredited care center, where strict guidelines help ensure accurate results.
Watch the video to hear CF clinicians discuss:
Learn more about sweat tests and how doctors diagnose cystic fibrosis here.
If your child is diagnosed with cystic fibrosis, you likely have lots of questions. Can my child live a normal life? How can I help my child get the best possible care? What will my child need to stay healthy? Although it may take you and your family time to adjust to the news that your child has CF, it helps to know that you are not alone.
Learn more about CF -- from diagnosis to living with the disease as an adult -- in "An Introduction to Cystic Fibrosis: For Patients and Their Families," or watch the video series.
Hear Preston Campbell, M.D., our current president and chief executive officer, talk about:
Fighting CF is a team effort. Every day, people with CF and their families, health care professionals, researchers, donors, and volunteers work together to advance the search for a cure and improve the quality of life for those with CF.
Watch a brief video on how clinical research has made a difference in the lives of people with CF.
We know that a positive CF diagnosis can be scary, but take action by getting involved in your local CF Foundation chapter.
The best place to receive comprehensive cystic fibrosis care is at one of the more than 130 Cystic Fibrosis Foundation-accredited care centers nationwide, which specialize in treating CF.
Because CF is a complex disease, caring for someone with the disease requires a team approach. At the center of that team is you, your child, and your family. Guiding you every step of the way and providing specialized, comprehensive care are experts and specialists, including CF nurses and doctors, dietitians, social workers, psychologists, and respiratory therapists who are all trained in treating infants and children with CF.
Watch the webcast below featuring Peter Moygazel, M.D., Ph.D., to learn more about the pediatric CF care team, including:
You and your child can expect to have regular visits with this care team for checkups and check-ins multiple times a year. Members of your CF care team will test your child's lung function, prescribe necessary medications and treatments and work closely with you to help you manage your child's disease.
Learn more about your child's CF care team.
Listen to CF clinicians discuss:
Treating a complex disease like cystic fibrosis requires therapies that address problems in different parts of the body, especially the lungs and the digestive system.
Cystic Fibrosis Foundation-accredited care centers work closely with people with CF and their families to create individualized treatment plans.
Each day, most people with CF typically do some form of airway clearance to help loosen and get rid of the thick mucus that can build up in the lungs. Many people with CF use an inflatable vest that vibrates the chest at a high frequency to help loosen and thin mucus.
Most people also take inhaled medicines -- liquid medicines that are made into a mist or aerosol and then inhaled through a nebulizer. These medicines include antibiotics to fight lung infections and therapies to help keep the airways clear.
Watch parents of children with CF and a respiratory therapist talk about:
People with CF typically take pancreatic enzyme supplement capsules with every meal and most snacks to improve absorption of vital nutrients.
Recently approved drugs for CF include ivacaftor (Kalydeco®) and lumacaftor/ivacaftor (Orkambi®), which treat the underlying cause of CF in a small number of people with specific mutations of the CF gene. All other CF therapies available today treat the symptoms of CF.
Work is ongoing to find additional CF therapies that could help improve key symptoms of the disease by targeting the disease at its root.
Learn more about treatments and therapies for CF.
In addition to daily
treatments and regular visits with
your care team, caring for someone with cystic fibrosis means being “germ smart.” For people with CF, some
germs can cause serious lung problems, including lung infections. That's because thick, sticky mucus builds up in their lungs, allowing germs to thrive and multiply.
Germs are all around us, but there are steps you and your family can take to avoid germs and help keep your child healthy. Basic ways to help your child avoid germs include teaching them to:
Listen to four families discuss:
Learn more about germs and bacteria that are especially dangerous for people with CF and what you can do to be germ smart.
Listen to CF clinicians, parents, and people with CF discuss:
Proper nutrition -- including a high-fat, high-calorie diet rich in vitamins and minerals -- is vital for people with cystic fibrosis, especially children. Thick mucus often gets in the way of proper digestion and the disease can rob children of the nutrients they need to grow.
compensate, almost everyone with cystic fibrosis needs to take
pancreatic enzyme supplements with meals and snacks.
Taken by mouth, the enzymes go to work in the intestines to help digest food so
it can be absorbed by the body. If enzymes and proper nutrition alone aren't
enough, a feeding tube may be required.
Watch parents of children with CF and a dietitian talk about:
Today's insurance landscape can be hard to navigate, but we are dedicated to helping you get the coverage you and your family need.
Learn more about navigating insurance.
Most people with cystic fibrosis live a normal daily life, with the challenge of incorporating daily medications, airway clearance techniques, and other treatments and medications. Children with CF grow up, go to school, have friends, have hobbies, and can exercise and play sports. Many go to college. Many marry and have families.
In addition to managing your child's treatment and care, it helps to understand what to expect as your child grows.
Watch parents of children with CF and their kids discuss:
As the parent of an infant with CF, you may have many questions and may be feeling a range of emotions. In addition to comprehensive care and medical support, the Cystic Fibrosis Foundation offers the "Pathways to Lifelong Health" video series for parents of babies recently diagnosed with CF. This series includes perspectives from both CF care team members and CF parents and covers topics including diagnosis, nutrition, airway clearance, balancing daily life, and CF care and support.
Watch the video series here.
Learn more about recommended clinical care guidelines for newborns to 5-year-olds, including a schedule to guide care teams.
Caring for and treating cystic fibrosis doesn't just happen at home. It happens every day, everywhere your child goes -- including day care and school.
Letting a day care or school know your child has CF is a personal decision. You do not have to disclose this information, but enlisting the help of educators can make it easier for your child to achieve their academic goals while maintaining their health.
We offer a number of resources for parents of children with CF who are starting school, including information about how to educate teachers about the disease, a letter template for informing a school that your child has CF, what to do when there is more than one child at school with CF, and more.
Watch families, a school health coordinator, a care provider, and a social worker talk about:
Learn more about working with your child's school.
A child's first questions about CF often come after starting school. He or she sees that other children do not take enzymes or do daily airway clearance. They may be asked questions about CF by other children, adults, or teachers.
The goal of telling your child about CF is to help your child know what CF means and why eating right, taking enzymes and other medicines, and doing airway clearance is important. Another goal is to get your child ready to do his or her own care. Children should be taught about CF as soon as they can understand. What you say to your child depends on his or her age, personality, and ability to understand. If you have questions, ask your CF care team for help.
Watch the families of children with CF discuss:
To learn more about how people with CF can go on to lead long, fulfilling lives, watch an adult with CF discuss:
Caring for anyone with a long-term disease -- especially if that person is your child -- is stressful. Parents of children with cystic fibrosis are more likely to experience anxiety, depression, or both compared to parents in general. Parents of a child with CF can focus so much on caring for their child that they do not notice when they are beginning to have problems themselves.
But you are not alone. If you recognize signs of stress, talk to your child's care team and your primary care provider so they can work with you on ways to reduce it. This way, you can avoid developing more serious depression and anxiety.
Learn more about coping while caring for someone with CF.
Reference to any specific product, process, or service does not necessarily constitute or imply its endorsement, recommendation, or favoring by the Cystic Fibrosis Foundation. The appearance of external hyperlinks does not constitute endorsement by the Cystic Fibrosis Foundation of the linked websites, or information, products, or services contained therein.
Information contained on this site does not cover all possible uses, actions, precautions, side effects, or interactions. This site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
FDA-approved drug information is available at dailymed.nlm.nih.gov/dailymed.
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