I agree with the saying that laughter is the best medicine. I've been taking it for years.
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The Patient and Family Experience of Care Survey helps cystic fibrosis care teams start formal quality improvement projects, but it also has helped my team become more sensitive to the voices of our patients.
A lot of people with cystic fibrosis are turned off by the thought of counseling. Finding the right counselor can make all the difference.
As a person with cystic fibrosis, I struggled all my life to gain weight, despite eating a high-calorie, high-fat diet. Once I started Trikafta® and my weight increased to normal levels, I had to learn a new, healthier way to eat.
I learned early on that I would never live a “normal” life. As I have struggled with feelings of isolation, I'm even more grateful for the supportive people in my life.
Despite my diagnosis of cystic fibrosis, I show no symptoms and have an above-average FEV₁. I struggle more with survivor's guilt than I do with this disease.
When I'm getting ready for clinic days, I fight the stress and anxiety with extra treatments, time with my dogs, and a semi-public singing of one of my favorite 80s songs. What do you do before your clinic appointments?
Many people with cystic fibrosis are counting on cystic fibrosis transmembrane conductance regulator modulators to improve their overall health. I'm learning that they have effects I hadn't counted on.
As the parents of two children with cystic fibrosis, we survived every parent's nightmare -- the loss of a child. Alyssa, our 29-year-old daughter, died in March 2018 after two failed double-lung transplants. We don't question why, because there is no acceptable answer. We just soldier on and fight for our son.
The convenience of growing up and living in a small town is that everyone knows your cystic fibrosis story. But, moving to a new city doesn't mean you have to greet everyone with a monologue about your illness. Wait until CF creates an opening.