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Lipedema gets new attention from St. Louis doctors after years of neglect, misdiagnosis

Many, many women (and yes, it’s mostly women) suffer from lipedema. One estimate suggests as many as 11% of women are affected. Yet one study found that only a small percentage of women got the proper diagnosis when they presented with a textbook case.

Dr. Thomas Wright wants to talk about lipedema.
Courtesy of Thomas Wright
Dr. Thomas Wright wants to talk about lipedema.

Dr. Thomas Wright believes that should be a call for action. As medical director of the Laser, Lipo & Vein Center in O’Fallon, Missouri, he frequently sees patients suffering from lipedema, which involves an excess buildup of fat, often in the lower body. That fat is metabolically different from regular fat. Yet physicians often wrongly suggest to patients it’s the result of lifestyle choices — and misdiagnoses can lead to patients not getting treatment, becoming more sedentary due to the excess weight and developing another, more serious condition: lymphedema.
In one case, Wright explained on Wednesday’s St. Louis on the Air, a patient actually ended up becoming seriously malnourished after gastric-bypass surgery. Her lipedema distracted her doctors from an otherwise too-thin body.

Listen to Dr. Thomas Wright on St. Louis on the Air

Wright acknowledged that lipedema flies under the radar in part because physicians are often hesitant to dig into issues around it. “For too much of the medical community, weight is such a touchy subject,” he said.

Wright discussed how increased attention to lipedema has led to, for the first time, published guidelines in the U.S. documenting the standard of care. Even so, he said, insurance companies often write off lipedema treatments as cosmetic. “It's very disheartening,” he said.

Along with advocacy and awareness, Wright is involved with a study now underway with the Washington University of School of Medicine and the Lipedema Foundation. The study uses MRIs and body scans to probe lipedema’s resistance to weight loss and better understand its biology.

“We're gonna get a better understanding of what makes this fat different,” he said.

Those interested in learning more about the study can contact Wright’s office at 636-397-4012 or email Wash U’s Vincenza Cifarelli at cifarelli@wustl.edu.

St. Louis on the Air” brings you the stories of St. Louis and the people who live, work and create in our region. The show is hosted by Sarah Fenske and produced by Alex Heuer, Emily Woodbury, Evie Hemphill and Kayla Drake. Jane Mather-Glass is our production assistant. The audio engineer is Aaron Doerr.

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Sarah Fenske served as host of St. Louis on the Air from July 2019 until June 2022. Before that, she spent twenty years in newspapers, working as a reporter, columnist and editor in Cleveland, Houston, Phoenix, Los Angeles and St. Louis.