Cystic Fibrosis
What is Cystic Fibrosis?
Cystic Fibrosis (also called CF) is a condition that most commonly causes frequent respiratory infections and digestive problems (such as failure to gain weight). Babies with CF may have trouble gaining weight and extra salt in their sweat. They also have thick mucus which is more difficult to cough up.
CF is a genetic condition. Everyone inherits two copies of the CF gene (one from our mothers and one from our fathers). People with CF have two gene changes. People with one CF gene change are called “carriers.” Carriers do not have CF, but have a higher chance of having a child with CF.
Why was CF included in Indiana’s newborn screen?
CF was added to Indiana’s newborn screen on October 1, 2007. Including CF in the newborn screen means that most children with CF will be diagnosed within the first month of life. Without newborn screening, most children with CF are diagnosed at an average age of 4 years. Children who have a positive CF newborn screen will receive treatment earlier, thereby greatly improving their quality of life.
How is CF newborn screening done?
Before babies go home from the nursery, they have a small amount of blood taken from their heel to test for a group of conditions. One of these conditions is CF. Newborn screening for CF includes measuring the level of a protein called immunoreactive trypsin (also called IRT) in a baby’s blood. If a baby has a high level of IRT, a DNA test is done. Indiana’s newborn screen tests for 46 of the most common CF gene changes. However, there are over 1,400 gene changes that are known to cause CF.
It is important for parents to understand that newborn screening cannot identify every child with CF. Babies who screen positive for cystic fibrosis need a second test done to confirm they have cystic fibrosis. Not all babies with a positive newborn screen will have cystic fibrosis.
Family Information Sheets
For more information about CF, please click on one of the links below.
- Where do I obtain a copy of an Indiana birth or death certificate?
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- Can I talk to an INShape Indiana fitness trainer about my specific health needs?
- Can I talk to an INShape Indiana nutritionist about my specific health needs?
- Is the old INShape Indiana tracking system still available?
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- How do I request a representative from INShape Indiana to attend my event?
- How can I find out more about the flu epidemic?
