Narae Yun, who lives in Garrison, will lead a team on Saturday (Oct. 22) for the 20th annual walk in New York City to benefit the Lupus Research Alliance (lupusresearch.org). Lupus is a chronic autoimmune disease.
What was your first clue you had lupus?
I was vacuuming and I had this intense pain any time my pinky and ring fingers touched anything. I’ve never felt that kind of pain before and as a 24-year-old woman who was healthy, exercised and ate well, it was strange to have joint pain. As the years went by, it progressively got worse and more frequent.
When was the low point?
I went to Puerto Rico with my partner, and the first day I got a bright-red rash on my cheeks after a day outside. That’s a telltale sign of lupus; it’s called a malar rash. Within days it progressed. I’ve never felt such a wave of utter exhaustion and intense joint and muscle pain. I couldn’t get out of bed. I needed help to walk to the bathroom. I couldn’t lift my arms to tie my hair because my muscles were so weak and I was in so much pain. Working was not an option; I had to go on disability leave.
How long did it take to get diagnosed?
Five years. I was in and out of doctors’ offices trying to find answers. When I first went to my primary-care doctor, she said: “It sounds like carpal tunnel. It’s probably from having a desk job. Put a tissue underneath your wrist.” She did blood tests and some of my autoimmune markers came up. Even then, it still took three rheumatologists and another 18 months to get diagnosed.
How do you feel now?
Thankfully, my lupus is stable most days. But there are days that I’m very much reminded that I’m still fighting. It’s not just medication — it’s my whole lifestyle that I need to consider. There are a lot of things that happen behind the scenes to make me able to do what I want to do: work, meet up with friends, be a good dog mom and a good partner to my boyfriend. It was quite a journey to get to where I am now.
When did you get involved with the alliance?
After I went back to work, I joined its Young Leaders Board. They’ve asked me to speak and to cut the ribbon for the opening ceremony on Saturday. My message is going to be gratitude for the folks who are out there. Having an invisible disease, and having a complex disease that not a lot of people know about, is so particular and lonely. People showing up in the lives of those who have lupus means the world.