Living with cystic fibrosis is a constant reminder of the things that have been taken from me. I feel like I've made a bargain with the devil, so to speak.
Site Search
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.
Finding a Balance Between CF and High School
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.
When I was 13, my family went from having two seemingly normal kids to two CF patients in a manner of a few short months -- and boy, did it change everything. Because of my late diagnosis, I faced a unique set of challenges that helped make me the strong person I am today.
Time after time, cystic fibrosis has shown me that what I thought was important could change with changing circumstances.
After turning 60, I decided to mark the milestone by creating a “living list,” 60 things I could do to raise awareness and money for cystic fibrosis care.
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.