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.
As the spouse of a woman with cystic fibrosis, there is a fine line between being a husband and caregiver. Although CF can add stress to our relationship, I've learned that sometimes the best thing we can do is simply step back and enjoy each other.
There were three important things that my parents did for me while I was growing up that helped me become an independent and positive person.
Learning to help my wife access her port is part of our shared journey with CF. Check out our video for some tips and tricks we’ve learned along the way.
Cystic fibrosis can be a third wheel in a dating relationship. I'm still looking for someone who can love us both.
Living with cystic fibrosis, your dreams for the future can be a little hazy. But while attending my grandmother's 90th birthday celebration recently, I was struck by an image of myself that I had never seen before: myself in the distant future.
When I was born, my parents were told that I would not live to see my 18th birthday. While I've had my challenges with cystic fibrosis, I've reached so many meaningful milestones in my life, including getting married. I'm so grateful for the “tomorrows” I've had.
The Partnerships for Sustaining Daily Care (PSDC) team had the opportunity to hear from people with cystic fibrosis, families and care teams at five Family Education Days at care centers across the country. Here's what we heard.
2017 may be a new year, but are the resolutions we make ever really “new”?