I struggled emotionally after learning that after negative carrier and newborn screens, my son had cystic fibrosis. I’m now advocating for people with rare mutations.
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It took an agonizing five months to learn whether my second son had cystic fibrosis. After two inconclusive sweat tests, a DNA test finally gave us the answer.
There are many ways you can support a family with a child or children with cystic fibrosis. Educating yourself about the disease and its treatments and offering to help without being asked are some of the best ways you can show you care.
Addressing variability in newborn screening can prevent missed diagnoses and delays in early care intervention.
I had no idea what cystic fibrosis was — or that I had it — until six months of pancreatitis led to a diagnosis.
I was not emotionally prepared the first time I saw my daughter in her vest. But now, I am thankful to have this device as a part of our daily routine to keep her lungs healthy.