How Lupus Spurred a Legislative Career

BY RANDY DOTINGA


In the year 2000, Georgia single mother Kim Schofield had a good job and a life filled with friends, family, and church. Then things fell apart when she was diagnosed with lupus. Her boss fired her, and she filed for bankruptcy. Now, 2 decades later, she’s a state legislator who advocates for patients like her who have lupus. (Scroll down to view segments of a video interview with Rep. Schofield.)

Her journey – from desperation to the halls of government – is a testament to the power of persistence. “The most important thing about advocacy is staying connected, staying engaged, making relationships, making your voice heard,” Rep. Schofield said.

Her advocacy began when she put a notice in a newspaper about a meeting at her church for people with lupus. “Sixty-five people showed up. So I said, ‘Wow, this is enabling women of color.’ But they didn't know any more than I did about the disease. I said, ‘Something's wrong. We're not educating enough.’ ”

Rep. Schofield started a support group and began calling Georgia legislators for help. She’d get disconnected or put on hold. She persisted. Then she started button-holing lawmakers in person: “I have lupus and I would love to talk with you.”

A state senator who had a neighbor with lupus helped Rep. Schofield break through and get attention from lawmakers. Soon, she was known as the “lupus lady,” the one behind the new Lupus Awareness Day event at the state capitol.

“In the beginning, we really just wanted someone to acknowledge that lupus was a real disease,” she said. In 2017, Rep. Schofield ran for office and won her race to represent a Georgia House of Representatives district that serves part of Atlanta and its suburbs.

In her first year in office, she was able to get the state to fund lupus research and start a telemedicine project across rural Georgia. The state also developed a program to educate school nurses about lupus and screen school-children for the disease.

Now, she’s working to help people with lupus keep their jobs, and she’s developing legislation to recruit and retain rheumatologists in underserved parts of Georgia. She’s also seeking job protections for people with lupus.

“There is nothing that a person can understand about your story if you don’t tell it,” she said. “Once voices are heard, then action gets taken. Don’t give up. You have to be resilient, you have to stay focused, and you have to have fun.”

Getting a diagnosis


 

"A series of loss"


 

"Taking lupus from a whisper to a shout"


 

Working in research and advocacy


 

Running for office


 

Engaging in advocacy through relationships