Opinion: It took years for my Black son to be diagnosed with cystic fibrosis. Then it happened to my family again

Twenty years ago, cystic fibrosis wasn’t a household term for me. Today, cystic fibrosis — a genetic disorder that causes a buildup of thick, sticky mucus that can damage organs, especially the lungs — has become a centerpiece of my family’s lives, sending me on an advocacy mission to improve diagnosis and care for all families, regardless of their racial or ethnic background.

When we began building our family, my husband and I were unaware that we carried genes that can cause cystic fibrosis. Our 20-year journey, spanning the birth of four children and two CF diagnoses, exposes a health care system ill-equipped to recognize and treat cystic fibrosis in non-white patients. But it also provides lessons for health care providers, policymakers, and fellow parents to work toward health equity in CF diagnosis and care.

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