With a late diagnosis, I had every reason to feel hopeless and alone, but getting involved and connecting to others truly gives me hope for my future.
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When my daughter was diagnosed with cystic fibrosis as a newborn, I was shattered. But then, I decided I would raise her to know that CF was something she had, not who she was.
Our dream for our daughter, Eden, is the same one that parents have for their kids who don't have cystic fibrosis. We want her to be happy and realize her true potential.
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.
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.