Pageant group alights at OMRF to get inside look at local lupus research

The African American girls wearing pageant sashes and varying shades of purple walked through the hallways of a local medical organization, questions forming as they looked around with curiosity.

Maudie Simpson, of Edmond, beamed with pride as the inquisitive group of young people and their mothers recently toured the Oklahoma Medical Research Foundation (OMRF), 825 NE 13, to learn more about lupus. The tour was coordinated as an educational prelude to a POP Rally — Put on Purple — planned for April 13 along a stretch of NE 23, not far from Martin Luther King Ave. The fundraising rally will be hosted by Simpson and the Oklahoma North East Lupus Support Group known as ONE LSG that she founded. Purple is the designated color for lupus awareness.

For more than 20 years, Simpson, 62, has organized gospel concerts, rallies and jazz events to raise awareness about lupus in the Black community, which is one of the communities of color disproportionately affected by the disease.

According to OMRF, lupus is a chronic autoimmune disease in which the body’s immune system confuses healthy cells with foreign substances, like viruses and bacteria, and attacks the body’s tissues and organs. The disease affects more than 1.5 million Americans and 5 million people worldwide, according to the Lupus Foundation of America, and around 90 percent of those diagnosed with lupus are women, and it is two to three times more prevalent in African Americans, Asians, Hispanics and Native Americans.

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Why is it called the Butterfly Pageant?

Simpson said the annual Butterfly Pageant is so-named because one of the common signs of lupus is a butterfly-shaped rash across the cheeks and bridge of the nose. She said she wanted to go further in her education efforts by coordinating a tour for pageant participants so they could see inside of OMRF, where lupus specialists operate a clinic where they treat patients, conduct lupus research and clinical trials.

The pageants have raised money to help support local lupus patients in a variety of ways and this year's upcoming pageant is sold out. But Simpson said she felt this year's participants needed to learn more about the disease from professionals who have been conducting research and helping lupus patients for more than 20 years.

"I wanted them to understand what lupus was," Simpson said. "I wanted them to understand that you're not just doing this pageant for no reason. lupus, awareness is a big thing for me."

Tony Thornton, an OMRF spokesman, said lupus is one of the foundation's research focal points, and it has a lupus "cohort" consisting of thousands and thousands of blood and tissue samples donated by clinic patients who have donated their samples to help advance the foundation's understanding of lupus.

The inquisitive group of young pageant participants listened to Christian Wright, a University of Oklahoma Health Sciences Center graduate student, along with doctors and others along the tour.

Simpson said she was diagnosed with lupus in 2003, after a two-year search for what ailed her. She said her story is not uncommon for many people who are eventually diagnosed with the disease. Lupus is described as an "invisible illness" by some people because it is often not recognizable to others, according to the Centers for Disease Control and Prevention. The Atlanta-based CDC and its partners are working to make lupus visible by raising awareness about it, which is what Simpson has made it her mission to do in the Oklahoma City metro area.

Simpson said the knowledge gleaned by the tour participants will hopefully help them raise awareness in the community about lupus and become advocates for those who have been diagnosed with the disease and the work being conducted at the OMRF.

She said so many people with lupus need their families, friends and others in their lives to become educated about what lupus is so they may be more helpful to those who have the disease and know what to look for in terms of symptoms.

Caroline Allen, OMRF director of community relations, said tours are conducted on a regular basis each year and they help provide more awareness about the foundation's work.

"We have a lot of school groups and tech centers and university groups. This is raising awareness ... it's like she (Simpson) said, this is about having advocates to get the word out about OMRF and the research. I think once people get here and they hear from the scientists, they're like, 'Wow, that's incredible,'" Allen said.

This article originally appeared on Oklahoman: OMRF explains lupus research to pageant group raising disease awareness