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.
If you show symptoms of cystic fibrosis or your baby has a positive newborn screen for CF, a sweat test at a CF Foundation-accredited care center can help provide a CF diagnosis by measuring the concentration of salt in a person's sweat. This painless test is the most reliable way to diagnose CF.
The sweat test is considered the gold standard for diagnosing cystic fibrosis. Sweat tests should be done at a CF Foundation-accredited care center, where guidelines are used to help ensure accurate results. The sweat test is performed by a trained technician and the results are evaluated in an experienced and reliable laboratory.
Did You Know?
The sweat test is the “gold standard” for diagnosing cystic fibrosis.
The sweat test can be done on an individual of any age. However, some infants may not make enough sweat to do the test. If an infant does not produce enough sweat the first time, the test should be repeated.
If your baby had a positive newborn screen (NBS) or you received a positive prenatal genetic test, it’s important to schedule a sweat test as soon as possible once your newborn reaches 10 days of age. At the latest, babies with a positive NBS or prenatal
genetic test should have a sweat test performed by the age of 4 weeks to ensure that any health issues or changes can be found early and treated quickly.
The sweat test measures the amount of chloride (a component of salt) in the sweat. There are no needles involved in this test. In the first part of the test, a colorless, odorless chemical (pilocarpine) and a little electrical stimulation is applied to
a small area of the arm or leg to encourage the sweat glands to produce sweat. A person may feel tingling in the area, or a feeling of warmth. This part of the test lasts about five minutes.
The sweat is then collected on a piece of filter paper or gauze or in a plastic coil. This step lasts for 30 minutes. The collected sweat is then sent to a hospital laboratory to measure how much chloride is in the sweat. The sweat test usually takes about
an hour, but it may take longer. When you schedule the test, ask how long it will take and when you can expect to learn the results.
Watch a video that further explains the sweat test and shows how it is done.
There is no activity limit or special diet needed before the sweat test. However, you should not apply creams or lotions to the skin 24 hours before the test. You can continue all regular medications. These will have no effect on the test results.
Babies should be fed their usual amount at their usual times.
Read the CF Foundation's guidelines for sweat testing.
People with CF have more chloride in their sweat than people who do not have CF.
For a child who has CF, the sweat chloride test results will confirm the diagnosis by showing a high chloride level. A baby has to sweat enough to do the test. Full-term babies usually produce enough sweat by 2 weeks of age. The test should be done as soon as possible between 10 days and, at the latest, 4 weeks of age for babies who have had a positive NBS or prenatal genetic test. Typically, sweat chloride values do not change from positive to negative
or negative to positive, as a person grows older. Sweat test results also do not vary when a person has a cold or other brief illness. If a sweat test is done correctly, then results that are positive will show a high chloride level. To
understand what the sweat test results mean, a chloride level of:
When sweat chloride test results fall between the range of 30-59 mmol/L, the sweat test is usually repeated.
If your child received a positive NBS and has sweat test results that fall into the intermediate range and one or no CF-causing mutations, he or she will be classified as having CF-related metabolic syndrome (CRMS), also known as CF Screen Positive, Inconclusive Diagnosis (CFSPID). This designation also applies to children who have a positive NBS, a sweat test result less than or equal to 29 mmol/L, and two CFTR gene mutations, with at least one that does not cause any physical CF symptoms. A CRMS/CFSPID designation is only applicable to those who had a positive NBS.Further testing may be recommended for those whose sweat test results fall into the intermediate range and whose genetic analysis determines unknown mutations or that their CFTR genotype is undefined. If further testing is unavailable or found to be inconclusive, the diagnosis cannot be resolved, and they may be considered to have CF-Related Disorder. A positive NBS is not required for this classification.
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