Learn about cystic fibrosis, a genetic lung disorder that affects the 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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
Our goal is to educate policy makers about the needs of people with cystic fibrosis so that they make smart decisions about CF-related research, treatment, and access to care.
We recognize the value of tapping into the expertise that only people with CF and their families have. We invite you to share insights to help improve and develop programs and services that support the daily lives of people with CF.
Our mission is to find a cure for cystic fibrosis and improve the quality of life for those living with the disease. We can't do it alone. Help us add tomorrows by giving today.
In addition to working for a cure, the CF Foundation supports programs and policies to improve the lives of people with CF. Help us by raising awareness of CF, participating in a fundraising event, or volunteering with your local chapter.
Newborn screening (NBS) is a nationwide program to find babies born with certain health conditions, including cystic fibrosis. While a sweat test should be used to rule out or confirm a CF diagnosis, NBS can help you and your health care providers take immediate steps in order to keep your child as healthy as possible.
Newborn screening for CF is done in the first 2 or 3 days after birth. Early treatment may prevent serious, lifelong problems.
By diagnosing CF early, CF health care providers can help parents learn ways to keep their child as healthy as possible and delay or prevent health problems related to CF.
Research shows that children who receive CF care early in life have better nutrition and are healthier than those who are diagnosed later. Early diagnosis and treatment can:
Newborn screening is done during the first few days of your baby's life -- usually by a health care provider in the hospital. A few drops of blood from a heel prick are placed on a special card, called a Guthrie card.
This card with your baby's information is mailed to a special state laboratory that will test the blood sample for certain health conditions, including CF. In some states, newborn screening involves two blood samples, one at birth and one a few weeks later.
All 50 states and the District of Columbia screen newborns for CF, but the method for screening may differ from state to state.
Every state's CF newborn screening program begins with a blood test from the baby to check the levels of a chemical made by the pancreas called immunoreactive trypsinogent, or IRT.
Did You Know?
All 50 states perform newborn screening for cystic fibrosis.
IRT is normally found in small levels in the body. In people who have CF, IRT levels tend to be high but IRT levels can also be high if a baby is premature or had a stressful delivery or for other reasons.
Some states only test IRT levels on the first blood test. These are called IRT-only states. Other states conduct both an IRT and a DNA test. These are called IRT-DNA states.
Learn more about these screening methods.
If you have questions about newborn screening or genetic testing for CF, please
contact a CF Foundation-accredited care center or talk with your doctor.
Based on your baby's newborn screening results, you may be asked to bring your baby to a CF Foundation-accredited care center for sweat testing to either rule out or confirm a CF diagnosis.
Babies with two CF gene mutations are very likely to have CF. However, a sweat test should be used to confirm a diagnosis of CF.
Babies with only one gene mutation found on a newborn screening result probably do not have CF. A high IRT level sometimes occurs when a baby is a carrier of CF.
Not all CF carriers (people who have only one CF gene mutation) will be found with the blood test that measures IRT. Most CF carriers will have normal IRT levels, and will not be identified by newborn screening.
Babies with no CF gene mutations but who have very high IRT levels are unlikely to have CF. As a precaution, the health care provider might ask parents to bring the baby to a CF Foundation-accredited care center for a sweat test.
If the sweat test confirms that your baby does not have CF, he or she may have CFTR-related metabolic syndrome (CRMS). You can learn more about CRMS by speaking with a doctor at a CF Foundation-accredited care center.
To learn more about the newborn screening method used in the state where your baby was born, please contact
Results from newborn screening for CF can take longer than one week after a blood sample is collected. Ask your baby's primary health care provider when you can expect results from the CF screening.
The CF screening test checks for IRT, a chemical made by the pancreas. It is normally found in small amounts in the body.
When the pancreas is stressed before a baby is born, more IRT is released into the baby's blood. The IRT level can be high if a baby is premature or had a stressful delivery, or for other reasons. IRT levels tend to be high in people who have CF. When high IRT levels are detected in the blood, the results of the newborn screening are said to be positive.
Watch the "Cystic Fibrosis Newborn Screening" video from Nemours to learn why an abnormal test result does not necessarily mean your baby has CF.
A positive newborn screening result tells you that your baby might have CF and that further testing through a
sweat test is required in order to rule out or confirm an actual diagnosis.
The sweat test will measure how much salt is in your baby's sweat. This test is the most reliable way to diagnose CF.
The sweat test should be done at a CF Foundation-accredited care center. The staff will work to schedule the sweat test as soon as possible.
For more information about scheduling a sweat test appointment, please contact the CF care center closest to you. How long you have to wait before getting a sweat test depends on your baby's needs and the care center conducting the test.
Any baby who has had a positive (abnormal) CF newborn screening result should get a sweat test to find out if the baby has CF. This is true even if the mother had a negative CF blood test when she was pregnant.
Hear from other parents who received positive Newborn Screening results in this short video from Nemours.
First of all, remember that you are not alone. There is a strong and growing network of people with CF, other parents and families, health professionals and care centers to help you and your baby. Thanks to this network -- and to aggressive research and new therapies -- people with CF are living longer and healthier lives.
To learn more about how other families have coped with a positive CF diagnosis, watch our "CF Newborn Screening and Diagnosis" video.
As soon as possible, you should contact a CF Foundation-accredited care center. The health care professionals at these centers will help you learn more about CF and become your partners in creating a plan to keep your baby healthy.
Watch the webcast, "Partnering for Care: CF Foundation-accredited Care Centers" to learn more about CF care centers.
The most important thing is to work closely with the CF health care professionals at your care center. They will work with you to develop a plan for your baby's health -- including avoiding germs, eating smart, keeping lungs clear and exercising regularly.
Your baby will need to follow a daily treatment routine to stay healthy and maintain optimal lung function.
Hear other parents of children with CF share personal experiences about how they cared for their baby during the first year.
Thanks to the community of people living with CF and their families who participate in CF Foundation-supported research and work with care teams at CF Foundation-accredited care centers across the country, there are more options available to treat CF than ever before. These include drugs to help clear CF mucus out of the airways, reduce inflammation, fight germs and help your child grow.
There are also new drugs designed to treat the underlying cause of CF in people with certain CF gene mutations, and similar therapies are in development for more people living with CF.
A diagnosis of CF can lead to many different emotions. Understanding how to cope with these emotions is the first step in learning how to raise a happy, healthy child.
If your baby's newborn screening results found one CF gene mutation and the sweat test was negative (normal), your baby does not have CF. A test result of one mutation means that your baby is a CF carrier. A CF carrier is healthy and does not have the disease.
We encourage you to talk with your child when he or she is old enough to understand genetics. Then, you can explain what it means to be a CF carrier.
It will be important for your child to know that he or she could pass the CF gene mutation to his or her future children. His or her partner might want to get CF carrier testing if and when they plan to have children.
CF gene mutations are shared in families. Because of this, you should tell your blood relatives that they could be carriers of a CF gene mutation, so that they and their partners can decide if they would like to be tested.
You and your child could discuss meeting with your child's doctor, a genetic counselor or a genetics nurse specialist when your family is ready for that conversation.
Researchers are making rapid progress in understanding CF genetics. Much more will be known about CF genetics when your child is ready to have children.
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