In my experience, the best way to support a loved one with cystic fibrosis is to listen closely and remember the details of his or her most common treatments and complaints.
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What I thought was a cold turned out to be COVID. I shared my positive test result with my CF care team. Not only did they let me know of an important drug that was available to reduce the risk of getting severe symptoms, but they also helped me find it since the drug was in short supply.
Although I don’t consider having a chronic illness like cystic fibrosis a good thing, I accept it and I think others should, too.
I was determined to finish school and set a good example for my children. Along the way, I learned how important it is to have a strong support system to help manage the challenges that can come with cystic fibrosis while I pursue my dreams.
Preparing for the school year with cystic fibrosis involves careful planning and advocacy. Since my daughter, Desi, started school, I’ve learned about how to best prepare Desi, her teachers, and school administration to help ensure her education and health thrive.
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.
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.
Having to isolate from our loved ones after the birth of our first child -- right as the COVID-19 outbreak hit our community -- was doubly difficult, but with a little education, our support network came through for us.
As a community, we are very good at masking and keeping a safe distance to reduce risk from germs. And just like we have highly effective therapies to treat CF, we now have highly effective vaccines to protect our kids from COVID-19.
My service dog, Jasper, and I relocated across the country and began to find our footing in our new home just before devastating forest fires started spreading around the area. Now, I feel more grateful than ever for the irreplaceable things in life, like Jasper.