Lipedema's invisible toll

Annie just couldn't understand it: she exercised diligently and ate healthfully, but stubborn layers of lumpy fat still coated her buttocks, hips, thighs, and calves. Strangely, however, her arms and torso were far slimmer.

For decades Annie sought some insight into her conundrum, but met only with frustration. Doctor after doctor dismissed her concerns, saying she was holding on to "baby weight" from pregnancy or was simply obese. And dieting only magnified the problem.

"Her upper body would really slim down, but the lower half would stay the same, which was almost more disfiguring because there was such a mismatch," recalls Dr. Gregory Piazza, director of vascular medicine at Harvard-affiliated Brigham and Women's Hospital.

Dr. Piazza was able to discern what other physicians hadn't: Annie has lipedema, an underrecognized condition occurring almost entirely in women. Characterized by an abnormal and localized buildup of fibrous, fatty tissue, typically in the buttocks and legs, lipedema has been reported to affect as many as 12% of women around the world, but the true incidence is unknown.

Many women with the condition are misdiagnosed. Others feel too ashamed about their bodies to seek help. (See "Lipedema's emotional damage can run deep".) And the implications aren't merely cosmetic, with lipedema causing a host of physical problems that can undermine a normal way of life.

"Lipedema is more common than people would guess," Dr. Piazza says. "We really don't have a sense of how common, but we know it's underdiagnosed. Not a tremendous amount is known about lipedema—research is only getting started now in earnest."

Hormonal link suspected

Despite a lack of scientific data, it's clear that lipedema is distinguished by these features:

Feet and legs are disproportionate in size. "Many patients have what we call an ankle-cuff sign," Dr. Piazza says. "Feet look normal, but all of a sudden it resembles what we see on an athletic sweatsuit — where there's an elastic band around the ankle and then the fabric puffs out on the calves."

Skin is bumpy, uneven, and sometimes dimpled. A major tip-off to lipedema is the unusual texture on affected skin areas. In the condition's early stages, the skin feels similar to sand. But over time, it feels more like pebbles, and then eventually like small stones. This effect stems from fat cells continuing to increase and enlarge.

"Patients often offer a set of common refrains: they started noticing they had a different shape to their legs at puberty or in their teen years; they always had heavier legs than their classmates; and when they tried to lose weight, their upper body got thinner but their legs stayed the same," Dr. Piazza explains.

Lipedema appears to run in families. And since nearly all people with the condition are women, our hormones are also believed to play a major role. Indeed, periods of hormonal upheaval such as pregnancy and menopause — and even taking birth control pills — often correspond to worsened symptoms. "Patients usually notice big changes around those life events," Dr. Piazza says.

Disruptive physical effects

Lipedema can be unsightly. But it also leads to myriad physical effects, including pain and tenderness, especially when pressure is applied to the skin; loose joints; trouble walking; and easy bruising. Another potential offshoot is the similarly named lymphedema, extreme swelling that occurs when the body's lymph vessels become blocked and fluid cannot drain properly.

A national survey of more than 700 women with lipedema published in the February 2024 issue of Vascular Medicine suggests these symptoms can be highly disruptive. "From a physical standpoint, the pain and limited mobility sometimes keeps them from doing their jobs comfortably and even from doing the daily activities they need to do," Dr. Piazza says.

Because of the dearth of research — and the fact that many doctors don't understand the condition — some patients go years before receiving an accurate diagnosis. Often, lipedema is mistaken for cellulite—lumpy, dimpled fat that collects under the skin. But lipedema deposits are not merely fat; they are composed of connective tissue as well.

Lipedema is also frequently misconstrued as obesity. But while many people with lipedema carry extra pounds, lipedema doesn't result simply from being overweight. "Obesity has a very complicated relationship with lipedema," Dr. Piazza says.

"I tell my lipedema patients that two grand mistakes can be made in diagnosis and treatment: to dismiss lipedema as just obesity or to dismiss obesity as just lipedema," he says. "There are patients with both, but we want to make sure we address their obesity as well since it increases their risk of cardiovascular disease."

Evolving set of treatments

Lack of awareness about lipedema is perhaps the greatest impediment to receiving an accurate diagnosis. But once that hurdle is crossed, often a physical exam alone provides sufficient evidence to pinpoint the condition.

There's no standard test to diagnose it, but imaging tests such as MRI, CT, and ultrasound scans can help doctors differentiate lipedema from other suspected problems — including lymphedema, cardiovascular disease, and an underactive thyroid — by measuring the thickness of skin layers.

While there's no cure, lipedema treatment has evolved over the years to offer numerous approaches. Some aim to remove fat deposits, while others target symptoms. These options include

• compression stockings or other garments
• pneumatic devices that press on swollen areas
• manual lymphatic drainage, a type of massage that helps move fluids through lymphatic channels
• medications to tamp down inflammation and swelling
• liposuction
• exercise — especially swimming — which can reduce fluid buildup and boost mobility.

Image: © Angela Cini/Getty Images