Although I'm glad that my two children with cystic fibrosis will soon have the opportunity to try Trikafta, I am also a little worried about whether they will have side effects and how well they will do on the drug long-term.
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While you are grinding through a seemingly never-ending cycle of cystic fibrosis treatments, it also can be helpful to engage in self-care activities that bring you happiness. This nurturing routine can help you keep perspective and remind you of why you are undergoing all these treatments in the first place.
In the summer months, some things require special attention for people with cystic fibrosis.
When Brady was diagnosed with CF, I felt like I'd been thrown into a river without a paddle. But then I realized my “paddle” was CF advocacy, and it could help steer our boat in the right direction.
There have never been as many new CF drugs in development as there are today. In the second plenary at NACFC, Dr. George Retsch-Bogart outlined the progress we've made, the road ahead and the changes needed to make it all possible. Read on for my key takeaways.
As Congress weighs budget appropriations, we look at long-term funding for the National Institutes of Health. We decided to sit down with the Foundation's senior vice president of research affairs to learn more about why the work being done at NIH is so important in the search for a cure for CF and other serious, rare diseases.
Last week I travelled to D.C. to serve on a panel discussing the recent developments in precision medicine. I've got to say, it was pretty neat.
For a time, I did not always do my daily cystic fibrosis treatments. Over time, I've come to see them as a necessary part of my daily routine.
Although I resisted it at first -- and wrestled with what it said about my worth as a person -- going on disability has helped me become healthier, happier, and more fulfilled than I was when I was working.
After careful thought, I decided to add medically prescribed cannabis to my care regimen. After using it for six months, I've noticed an improvement in both my mental and physical health.