After decades of identifying myself as Monique, “the girl with cystic fibrosis,” I didn’t know who I was anymore after Trikafta changed my health for the better.
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I didn’t realize how important my cystic fibrosis care team was — or how they had my back — until I stayed in a hospital where the staff had little knowledge of the needs of people with cystic fibrosis.
I was diagnosed with stage IV colon cancer. After one year, I’m still fighting a tiring battle with it and cystic fibrosis, but I won’t quit.
I was not emotionally prepared the first time I saw my daughter in her vest. But now, I am thankful to have this device as a part of our daily routine to keep her lungs healthy.
I asked the Cystic Fibrosis Foundation’s Dr. Whitney Brown about how cystic fibrosis care might change as the CF population grows, lives longer.
Now that I’m in my 40s and post-lung transplant, I’m beginning to embrace the realities of aging with cystic fibrosis. Despite the gray hairs and deepening wrinkles, I know that I am lucky to be looking forward to mammograms and menopause.
I was determined to make my dream of becoming a mother a reality despite the potential risks that pregnancy can cause for people living with CF. It certainly wasn’t easy, but the challenges of pregnancy and CF were rewarding in the end because I now have two wonderful girls who call me mom.
After I had to go on disability to focus on taking care of my health, I got involved with the CF community and volunteered with Community Voice. Little did I know it would help me when I needed it most.
Since I could remember, my sister shared her CF story to raise awareness, and she inspired me to do the same. Now, with this year's Teen Advocacy Day, we finally get to advocate together.
Understanding that I suffered trauma from medical encounters during my childhood helped make me a more effective self-advocate as an adult.