Navigating school can be challenging when you have cystic fibrosis. The following tips can help parents and students feel prepared for a productive school year.
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My daughter, Desi, recently started school. Here's what we did to prepare her to manage her cystic fibrosis and navigate the COVID-19 pandemic — and what we learned in the process.
One of the reasons I decided to attend boarding school was to take charge of my cystic fibrosis care. Although I’m not perfect at taking care of myself, I learned that the importance of staying on top of treatments when my parents gave me the chance to fail.
I felt so alone as a kid being gay and having CF — there weren’t any role models in the 80s and 90s that I could look up to. Eventually, I found people who understood what I was going through and that helped me feel good about who I was, and who I am today.
My school gave students a choice of how they want to go back to school: virtually or in person. After considering what made sense for my CF, learning style, and mental health, I decided to attend school in person.
When my university first shut down in March because of COVID-19, I thought our quarantine would be temporary. Now I am contemplating a fully online fall semester. I'm calling on all colleges to continue to accommodate the needs of their high-risk students.
Annoying though it may have been for me, my mom was determined to raise a daughter who was healthy despite CF. However, we would both soon realize that not every symptom is visible.
After years of being treated as an oddity, I want people to acknowledge that I am a Black girl with cystic fibrosis. I want my voice to be heard.
In the fourth installment of our “Ask a Case Manager” series, we discuss what you should consider when making the transition from high school to college.