Today is World Rare Disease Day. According to the official site, “the main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.” This is the first year that it occurred to me that this could be a day “for me.” I have never really thought about myself as having a disease. It made me realize that I wasn’t sure if BPES was technically a disease, disorder, or a condition. I tried to do some research, but it is very confusing because all of the definitions seem to use the words interchangeably. I looked at multiple dictionary and medical sites, but here is an example just from Merriam Webster:
To start with, the ‘S’ in BPES stands for syndrome, which Merriam Webster defines as “a group of signs and symptoms that occur together and characterize a particular abnormality or condition.”
It defines a condition as “a usually defective state of health.”
A disorder is “an abnormal physical or mental condition.”
For disease it has “a condition of the living animal or plant body or of one of its parts that impairs normal functioning and is typically manifested by distinguishing signs and symptoms.”
So according to these definitions, BPES could fall into any of those categories! Even on the NIH government site, they use syndrome, condition, and disorder all on the same page explaining BPES. Condition seems to be the word used the most.
Thinking about it, for some reason I have a negative association with the word disease. In my head, a disease sounds like something that is serious and could cause death. I think that is why I have always thought of what I have as a condition. But the whole point of Rare Disease Day is to raise awareness so in that sense I suppose it doesn’t matter, and I should just embrace the day.
I decided that I will be participating by tweeting a picture of my face and using the designated hashtag #ShowYourRare. That would be the next step for me in terms of putting myself out there. The first one was this blog.