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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I was nervous about deciding to go to college — how would CF and the intensity of college fit together? There have been more than a few bumps along the way, but I’ve learned that through everything, I got this.
My son, who is Black, has cystic fibrosis. It seems like just a normal fact of life, but I have become frustrated with having to convince doctors that he really does have CF. I hope that one day people of color won’t have to have the same experience.
I initially struggled with how to share about my cystic fibrosis with people I met when I started college. Here’s what I learned.
Cystic fibrosis affects people of every racial and ethnic group. Of the nearly 40,000 people living with CF in the U.S., approximately 15% are identified as racially or ethnically diverse. Research shows that people of color with CF, particularly people who are Black and Hispanic, experience unique challenges and often have negative experiences that can lead to poorer outcomes. Some of these inequities are referenced in the following data.
The Foundation seeks to advance its mission by making improvements in key areas of health equity and outcomes and diverse workforce development.
The Foundation’s commitment to these principles will continue to be a cornerstone of the Foundation’s work to advance our mission in 2023.
When I was in college, I wanted to do it all and my health wasn’t as much of a priority anymore. I learned to accept that things will not always go according to plan and to integrate routine in my life to ensure my health comes first.
When I went off to college it was up to me to manage my cystic fibrosis for the first time without help from my family. I felt fine after skipping my medications and decided to stop using my noisy vest because it embarrassed me, and I wanted to make friends at my new school. As a result, I stayed in the hospital for a few weeks and left with a new perspective on life.