When I was growing up, having a positive cystic fibrosis diagnosis did not automatically mean that I got the care and treatments I needed. It wasn't until my 22nd birthday, when I was in poor health, that I decided I needed to get healthy and speak out for myself.
If you're the parent of a child with cystic fibrosis, you probably know the worry that comes along with sending your kid away to summer camp. To ensure that my own kids with CF were cared for at camp, I wrote the following letter outlining their special medical needs.
Since everyone in my graduating high school class knew each other by name, I'm guessing that everyone knew that I had CF. But it was never discussed. Rarely did anyone bring it up to me or ask me any questions, and that was just the way I wanted it.
I definitely attribute much of my good health to my support system. This disease would be much harder alone.
In our first 2016 “Living Today” video, Wes Parsel, 27, talks about almost everyone's New Year resolution: exercise. The big difference is that he's been doing this his whole life, in addition to his daily treatment routine.
Learn how Rachel Kinney fits studying for a computer science major, an active social calendar and daily cystic fibrosis treatments into her life.
Life isn't always full of happy moments. Some are heartbreaking and some are crushing. But through it all, the life Kari and I shared together were the happiest moments of my life. I wouldn't trade them for anything. They were worth every second.
Starting at 6 months of age, I began my daily journey battling my chronic illness, cystic fibrosis. And now, at 28, my heart is heavy because one of my nearest and dearest caregivers passed away unexpectedly … my father.
There are no easy remedies for the perpetual dance that the parents of a chronically ill child do to deal with the painful and enduring isolation. And personally, I found a sense of hopeless defeat.
Some days, the biggest struggle I have is accepting that I have CF.