Learning that your child has cystic fibrosis can be overwhelming. You may feel sad, guilty, scared, or even angry, but you are not alone. We are here to help.
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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.
Our community's shared journey makes us unique and unites us in the hardest of times for some and the most hopeful for others.
Although not part of my son's “official” care team, our local pharmacist plays a key role in his cystic fibrosis care.
We asked -- and hundreds of you answered -- how you pass the time during long treatments. Check out what the CF community told us when we asked what makes you #morethanCF.
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.
For those of us without a medication that targets our cystic fibrosis mutation, it's important to remember that our life with CF is a marathon.
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.
Cystic fibrosis can't take living away, especially when one loves life!
When my 8-year-old daughter with CF found out that the disease is potentially fatal, I was grateful for her optimistic views on life and death. But deep down, I was saddened with the thought of a cure being so far away that I wouldn't be around to see it. Today, my fears have dwindled.