TUCSON, Ariz. (KGUN) — Lipedema is a chronic medical condition characterized by an abnormal, often painful buildup of fat in the body.
The Lipedema Foundation says there’s still a need for more accurate research on the number of women affected by this disease, but a recent study estimates that nearly 10-11% of women worldwide are living with lipedema.
To help raise awareness, nonprofit organization the Lipedema Project established June as Lipedema Awareness Month in 2014.
“You probably know someone who has lipedema, said Dr. Karen Herbst, a Tucson endocrinologist who has dedicated her career to the study of fat and lipedema. “You’ve probably seen a woman on the street who has lipedema, so it’s so important to raise awareness and education.”
While Herbst treats patients full-time, she continues research in her off-hours. Work she’s been pursuing for nearly three decades.
She says while the disease can be underdiagnosed, it also faces issues of being overdiagnosed, since it presents similarly to obesity.
“There are definite differences, but it’s really all on the molecular level,” Herbst said. “Except for the feel of the tissue and also the pain component. A lot of people with non-lipedema obesity don’t have that pain component.”
Not all fat is lipedema, and patients with lipedema don’t always appear overweight.
“You have to have that disproportion,” Herbst said. “You have to have the pain. You have to have the nodular-fibrotic component. You have to have edema.”
Edema is swelling caused by fluid trapped in tissues like fat. It usually happens in a patient’s legs, causing a curve at the ankle and extra weight.
“If you’ve ever carried a plate of Jello, it’s very heavy,” Herbst said. “Well, if you have a lot of bound up fluid in your tissue, then it’s going to feel very heavy, and that’s what women with lipedema experience.”
Treatment usually takes two paths: conservative treatment and surgical treatment.
The conservative treatment uses medications including GLP-1s to minimize inflammation and compression garments to encourage internal fluid movement.
Surgery removes the lipedema tissue outright. The Roxbury Institute, where Dr. Herbst works, also specializes in surgical options to remove lipedema fat and reduce resulting pain.
If untreated, a patient living with lipedema’s pain could continue and even end up limiting their movement, which is why experts say it’s important to raise awareness and encourage patients to get treatment.
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Alex Dowd is a multimedia journalist at KGUN 9, where her work combines her two favorite hobbies: talking to new people and learning about the community around her. Her goal is to eventually meet every single person in Tucson. Share your story ideas with Alex via email, alex.dowd@kgun9.com, or connecting on Instagram or X.
