A family of 3 girls, the youngest had CF, the middle child and I, the oldest, are carriers. She was not diagnosed until she was 3 years old in 1973.
Learning about CF
Our mom involved us in her care from mixing her enzyme powder into applesauce when she was little to her, “daily beating”, lung therapy, before the vest was a thing. In high school, my science term paper presentation on CF lasted the entire class as questions poured forth from peers and the teacher. As adults, we were best friends and I was by her side as she passed away from colon cancer.
The more you know about CF, the better
I advocate now for CF in Louisiana and encourage colonoscopies for CF warriors as they enter adulthood. In the ’70s there was not much support for us as a family, but we did ok. If a low-fat diet was what she needed then we all ate the same way, no more frying in our house. Mom was a researcher and believed that knowledge about things helped you deal with it better. Our father also stayed in the military to keep benefits for her because pre-existing conditions were a reason to deny health coverage.
Helping others affected by CF
I love seeing how much more help there is for families to advocate for their cf warrior living the most productive life possible. My sister had a very productive career, was married, and loved being an aunt.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?