Emily V. Gordon Instagram – Today is #rarediseaseday, so I thought I’d celebrate with this video of myself wearing a Steve Winwood shirt and dancing to what I thought was Steve Winwood in an airport bathroom, and then realizing it’s Bruce Hornsby. I don’t love defining myself by my condition, but it does define a lot of my life. Having a rare disease can be a frustrating combination of advocating for yourself; understanding that sometimes there aren’t answers; pushing yourself to see how much your body can handle; working hard to not feel sorry for yourself if your body reminds you what you can’t handle; and taking your Ws where you can. I have a great treatment that keeps me relatively healthy most of the time, and I am grateful for that. So on this #rarediseaseday, I’m grateful for the field of medicine. God knows it’s not always perfect. I’m grateful for the good parts and also want more for all of us. More listening to us. More acknowledging when they don’t know the answer. And more focus on underserved populations. Google #rarediseaseday to find out more about it. And if you want to go a step further, DONATE PLASMA so that someone like myself can stay healthy. My apologies to Bruce Hornsby.