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.
Site Search
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.
I advocate for my son who has cystic fibrosis by sharing his story to increase awareness. From new friends to legislators, I tell as many people as I can about this disease, how it changes your life, and how we are fighting this thing head on.
Because of the threat to my health caused by COVID-19, I had to give up my dream job as a nurse practitioner. Now I am asking for paid leave expansion.
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.
Anything that slows down progress in research and the cure for this cystic fibrosis is my sworn enemy. Learn why the Improving Access to Clinical Trials Act (IACT) matters for our progress in the fight against CF and what you can do about it.
I decided that I wanted to live on the Caribbean island that I grew up on. Although it takes some planning and work, I'm thriving there.
As an individual with cystic fibrosis, I can give you all kinds of examples of how providers shouldn't treat their patients. However, it was my experience as a fictional patient that taught me how to be a better CF patient.
Religiously following a schedule and maintaining a to-do list may not seem like much fun, but they have brought sanity and wellness to a hectic life filled with graduate classes and cystic fibrosis treatments.