Ever wonder about an aspect of cystic fibrosis that you would love someone to research? Find out how you can submit a question in our first community-driven research project.
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In the third plenary, Dr. Wayne Morgan talked about the connection between cystic fibrosis care and the Patient Registry, and introduced a new way for people with CF, along with their families, to help shape the research conducted using the Registry.
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.
I initially struggled with how to share about my cystic fibrosis with people I met when I started college. Here’s what I learned.
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.
I used the Cystic Fibrosis Foundation Patient Registry Annual Data Report to ask my care teams questions to more effectively manage my CF. You can, too.
The latest trends in the health of people with cystic fibrosis who participate in the Patient Registry have been published in the 2017 Patient Registry Highlights Report.
Members of the cystic fibrosis community can have an even greater say in research when they vote for the Insight CF questions they most want answered. Readers have until June 21 to vote.