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Lupus sufferer on mission to organize Mississippi chapter for research and a cure

Updated: May. 20, 2021 at 8:02 PM CDT
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JACKSON, Miss. (WLBT) - An often misdiagnosed and debilitating autoimmune disease, lupus impacts an estimated 1.5 million Americans, causing a person’s immune system to attack its own tissues.

This is Lupus Awareness month and one Jackson woman is on a crusade to organize and find a cure. “It’s killing us from the inside out,” said Totonya Jackson.

She was officially diagnosed at 18, although she said it was suspected when she was 11. For 25 years she taught preschool, but the illness advanced with chronic pain, fatigue, attacking her body, ultimately the loss of mobility.

“I’ve had just about everything replaced except for my shoulders and elbows, and that’s because of the lupus and being on prednisone, the steroids for so long and then having Lupus it has its own form of arthritis, and I have rheumatoid arthritis.”

In November, with an already compromised immune system, she contracted COVID-19 and was hospitalized for over six weeks.

“The same symptoms as lupus,” said Jackson. “We have some of the same symptoms like breathing problems, lung problems. You know, so it took a toll on us.”

The 48-year-old is on a mission along with others to establish a Lupus foundation in the state for research and a cure. For eight years she and her two sons have collected money in Jackson to print fliers to inform the public about the illness. Last weekend, a walk was held in Fondren to raise awareness.

“It mimics everything before you can figure out that it’s lupus rheumatoid arthritis, junior arthritis, scleroderma, diabetes,” added Jackson. “It’s something to deal with. I want people to know and to get it checked.”

A Lupus fundraiser will be held Saturday at Fannin Lanes in Brandon from 3-5 p.m.

Varranda Henderson Love and Katurah Hughes are also working to establish a Lupus chapter in the state. If you would like to help or learn more, email unmaskingthemanyfacesoflupus@gmail.com.

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