The only thing that is certain in my life is the uncertainty of my teenage daughter's next hospital stay. Despite this, she has somehow managed to supervise her own academic life from a hospital room.
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As a parent of two kids, I find myself wondering if Anna's CF is changing Jack. Would he feel the same responsibility for her if she didn't have CF?
Looking back at my freshman year, I realize that putting college before my CF wasn't the first thing I had all wrong.
I had all the classic symptoms of cystic fibrosis, but neither I nor my doctors ever considered them in their totality. The symptoms were treated like separate problems -- asthma, nasal polyps, digestive problems -- until one specialist noticed a tell-tale sign that brought about my clarifying diagnosis.
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.
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.
The following questions and answers address concerns from the community about COVID-19 and school.
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.