We Have Responsibilities That Extend Beyond Our Health

We’re human beings, we have responsibilities – they extend beyond our health. We work, we have families, friends, hobbies, and obligations. We have lives outside of cystic fibrosis. My newest responsibility is my puppy, Blink. Blink is a Jack Russell Terrier (or so we think), and she’s absolutely taken over the house. We have another...
Continue reading...

Don’t Devalue Your Chronic Illness

I came across an opinion piece on STAT where Adam Hayden, a brain cancer patient, argues that drug companies and medical schools should be compensating patients for their “expertise” in whatever condition we are living with. I’ve never read an article that I have more wholesomely agreed with. Hayden talks about understanding the intricacies of...
Continue reading...

I Read “Alex: The Life of a Child”

Alex: The Life of a Child is THE book about life with cystic fibrosis. In the world of cystic fibrosis, many read it upon learning about the diagnosis of their child. Some parents hide it from their children, hoping they never find it… others read it with their kids. It will forever remain THE book...
Continue reading...