Having lived with cystic fibrosis for 47 years, I want to pay it forward and share the life lessons I've learned with new parents of children with CF.
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You can best manage your health when you know what to expect, what resources you can use, and a community of people with whom you can share your experiences.
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."
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 your or your baby's sweat. The test is painless and is the most reliable way to diagnose CF.
When my daughter was born, her newborn screening indicated that it was unlikely she had CF. But after months of mysterious symptoms, a sweat test confirmed her diagnosis. This unlocked answers not only for my daughter, but for our entire family.
Newborn screening (NBS) is a program run by each state to identify babies born with certain health conditions, including cystic fibrosis. Although a sweat test should ultimately be done to rule out or confirm a CF diagnosis, NBS can help you and your health care providers take immediate steps to keep your child as healthy as possible.