Over 300 million people are living with one or more of the 6,000+ rare diseases in the world today. I am one; I am rare. In October 2019 I was
I Am Rare: Rare Disease Day 2020 – 29 February
This week has been exhausting… and it is only Wednesday. I’m not complaining though, because today was a good news day. I wasn’t sure what to expect as we headed
Waking up from anaesthesia wasn’t as glamorous or fun as I was hoping it would be. I didn’t really know what to expect from this procedure; I was under 10 the last time I had a major surgery, so this was almost a new experience for me.
Yesterday Justin took me to my first appointment with two of the specialists at the University of Utah that I am seeing for my GPA. This appointment was for my
Christmas Morning I started taking 60 mg of prednisone daily. I wasn’t really sure what to expect regarding side effects outside of insomnia, which is something that I am already