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.
Parents of teens with CF often ask what they can do to help their child who is struggling to come to grips with their disease or is simply going through a rough patch. Here's some of my best advice.
Like many of my millennial compatriots, I was booted from my parents' health plan when I turned 26. While my friends were shrugging health insurance off as just another growing pain of their 20s, I was panicking.
As parents of kids with CF, we can make a life-transforming difference by focusing as much on their mental health as we do on their physical health. If you think your child's CF is taking an emotional toll, asking yourself these questions may help.
Looking back at my freshman year, I realize that putting college before my CF wasn't the first thing I had all wrong.
I had all the classic symptoms of cystic fibrosis, but neither I nor my doctors ever considered them in their totality. The symptoms were treated like separate problems -- asthma, nasal polyps, digestive problems -- until one specialist noticed a tell-tale sign that brought about my clarifying diagnosis.
Finding a Balance Between CF and High School
Protecting your children with CF, at all costs, sounds like a loving thing to do until you consider what it may cost them. To keep a balance between their health and healthy childhood development, my husband and I have learned that it takes a prudent approach with careful and creative decision making.
In a culture flooded with advertisements about the perfect body, secret weight-loss tricks and fad diets, our cultural ideals of weight are often skewed to an image that is far from healthy.