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 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.
Your doctor may classify your baby as having CRMS/CFSPID if he or she has a positive newborn screen and subsequent sweat chloride test results that fall into an uncertain or borderline range described as "intermediate."
Cystic fibrosis transmembrane conductance regulator (CFTR)-related metabolic syndrome (CRMS), also known as CF Screen Positive, Inconclusive Diagnosis (CFSPID) in Europe, describes an inconclusive CF diagnosis following newborn screening (NBS).
Infants who have CRMS/CFSPID show high immunoreactive trypsinogen (IRT) levels during NBS, but have sweat test results that fall within the intermediate range and fewer than two CF disease-causing mutations. Over time, it is likely that your child will either be diagnosed with CF or conclusively diagnosed as not having CF. 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.
The exact definition of CRMS/CFSPID is an infant with a positive NBS test for CF and either:
Although the future health of someone designated with CRMS/CFSPID remains unclear, there is a higher risk of experiencing problems in the airways, sinuses, intestines, pancreas, or the reproductive system. In some cases, evolving signs and symptoms, new information about disease-causing CFTR mutations, or changes in sweat chloride concentration levels may ultimately lead to a CF diagnosis.
You should see your regular doctor -- and a CF specialist -- if your child has any of these symptoms:
If your baby is classified as having CRMS/CFSPID, it's important to take him or her to a CF specialist before 2 months of age. In addition, infants should be seen by a CF specialist at least twice in their first year of life.
Unless your child experiences symptoms related to CRMS/CFSPID, the best thing to do is to have yearly checkups with a CF specialist at a CF Foundation-accredited care center so that any health changes or problems can be found early and treated quickly. Children with CRMS/CFSPID should also undergo at least one repeat sweat test at an accredited CF center. In addition, genetic counseling should be offered to families of individuals with CRMS/CFSPID, including a discussion of the risk in future pregnancies.
As is true for everyone, people with CRMS/CFSPID should not be around tobacco smoke. All people 6 months of age and older should receive an influenza vaccine every year in the fall.
Learn about the CF Foundation's CRMS care guidelines for health care providers.
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