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.
I was recently diagnosed with cystic fibrosis at age 67. Although I love my CF care team, I think it will be important for them to understand age-related care in addition to CF care — especially as the CF population ages.
I was recently diagnosed at 69 years old. Although it helped explain why I had been sick so often and gave me a new community, I can’t help but think about the lost time when my disease went untreated.
My life was turned upside down when I was diagnosed with cystic fibrosis caused by a rare mutation, but my passion for figure skating has helped me stay healthy and happy through it all.
My wife and I were heartbroken when our daughter, Ruth, was diagnosed with cystic fibrosis as a newborn. But CF can’t stop us from being optimistic about what the future holds for our family.
After managing various chronic symptoms my whole life, I was finally diagnosed with CF as an adult. As I struggled to cope with the news, my community rallied around me and taught me what true support looks like.
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.