Broderick Crawford Community Partnership Award: Bringing Lupus Survivors and Physician Researchers Together to Develop, Foster Understanding and Improve Outcomes

By Kelly Hale, Communications Coordinator

May 20, 2024

Broderick Crawford Community Partnership Award: LaTanya Lipprand, Marlene’s Kaleidoscope

Project Title: Bringing Lupus Survivors and Physician Researchers Together to Develop, Foster Understanding and Improve Outcomes

After being diagnosed with lupus over 30 years ago, LaTanya Lipprand spent years managing her lupus without much information in the community to help with understanding and education not just for her, but for others diagnosed with lupus and healthcare providers. And that led her to establish Marlene’s Kaleidoscope six years ago after her lupus forced her to go on disability because of the effects it was having on her lungs, heart, and joints.

“When I was diagnosed with lupus, I had just had a son and was given three years to live because they did not really know what lupus was. And a lot of that is still happening today,” Lipprand said. “It took me a few years to find a doctor who said, ‘I hear you; something is wrong with you.’ I was overlooked because I was an African American woman who had just had a child.”

Once diagnosed, she began researching lupus to gather as much information as she could because there was not a lot of in-depth information or resources, she could access in the Kansas City area.

“I started Marlene’s Kaleidoscope because I wanted to help other people who have been diagnosed with lupus be able to provide resources and information to the community to help educate people on lupus and bring awareness of the disease to the community,” she said. “We started a focus group that included lupus survivors, a doctor, and a community health worker. And we just started talking about the challenges.

“What we learned is only about 60% of people diagnosed understood what lupus is and that most people who don’t have lupus don’t understand it.”

Another challenge is getting to see a healthcare provider or specialist to get tested for lupus. A normal wait is anywhere between three and six months to get tested.

And maybe one of the biggest challenges is the cost of dealing with lupus each year. For patients with good health insurance, the out-of-pocket cost can start at around $20,000 per year.

As Marlene’s Kaleidoscope continues its grassroots efforts of education and awareness of lupus in the Kansas City area, they are also looking at the next steps which involve more research for lupus.

She expressed, "Investing in research will be a significant allocation of our funds,” she said. “We hear a lot ‘You don’t look sick.’ That is because when people with lupus go out, they want to look their best there are too many days when they cannot.

“There is also not one true test for diagnosing lupus, which makes it difficult to get a diagnosis. It can take years to get diagnosed and that is because you found a doctor that is educated about lupus. Lupus impacts both men and women, but there is a stigma around telling people that you have lupus because of the lack of awareness of the disease.”

Lipprand continues to visit health fairs, community health centers and more to continue the education and awareness of lupus across the Kansas City region to not only those diagnosed with lupus, but the community, including healthcare professionals. And she is looking for volunteers, board members and more to help with her mission.

Kelly Hale

Communications Coordinator

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