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.
Going on vacation without your child with cystic fibrosis can be hard, but here are some tips to help make it a little easier.
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.
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.
Going on a camping trip is a great way to relax and unplug from the daily grind, but when you have cystic fibrosis, unplugging requires some planning and strategy.
There are a lot of misconceptions about illnesses. For one, you're supposed to look sick -- or like other people's perception of a sick person. Once I started to doubt myself and the gravity of my illness, I began internalizing a whole lot of guilt.
Sometimes during weak moments, when my lung function has dropped despite doing everything in my power to hold off the destruction, I think, “What's the point?” Then I remind myself of the larger goal …
Here's my experience with that awkward moment when you have to tell that one person who has always been there for you your whole life that they need to just let go a little bit.
This is my story about when I met a man who showed me kindness, support, trust and compassion in a way that I had never known, and how I explained my CF to him -- on my own terms.
I've known for a while that pregnancy isn't an option for me due to complications related to my cystic fibrosis. Now that my husband and I are planning for children, here are some of the thoughts and considerations that impacted our family planning decisions.