Annie just couldn’t understand: She exercised diligently and ate healthy, but stubborn layers of lumpy fat still covered her butt, hips, thighs and calves. Strangely, his arms and torso were much slimmer.
For decades, Annie sought to understand her conundrum, but met only frustration. Doctors dismissed her concerns, saying she was retaining “baby weight” from her pregnancy or was simply obese. And dieting only amplified the problem.
“His upper body would really lose weight, but his lower half would stay the same, which was almost more disfiguring because of the mismatch,” recalls Dr. Gregory Piazza, director of vascular medicine at Brigham and Women’s Hospital , affiliated with Harvard.
Dr. Piazza was able to discern what other doctors couldn’t: Annie suffers from lipedema, an under-recognized condition that almost exclusively affects women. Characterized by an abnormal, localized accumulation of fibrous adipose tissue, usually in the buttocks and legs, lipedema is estimated to affect up to 12% of women worldwide, but its true incidence is unknown.
Many women with this condition are misdiagnosed. Others are too ashamed of their bodies to seek help. (See “The Emotional Damage of Lipedema Can Be Profound.”) And the implications aren’t just cosmetic, with lipedema causing a host of physical problems that can interfere with a normal lifestyle.
“Lipoedema is more common than you think,” says Dr. Piazza. “We really have no idea how common it is, but we do know that it’s underdiagnosed. Not much is known about lipedema – the research is just beginning in earnest.”
Suspected hormonal link
Despite the lack of scientific data, it is clear that lipedema is distinguished by the following characteristics:
The feet and legs are disproportionately large. “Many patients have what we call an ankle cuff sign,” says Dr. Piazza. “The feet look normal, but all of a sudden it looks like what we see on a sports tracksuit: there’s an elastic band around the ankle and the fabric then puffs up over the calves.”
The skin is bumpy, uneven and sometimes dimpled. A major clue to lipedema is the unusual texture of the affected skin areas. In the early stages of the disease, the skin feels like sand. But over time it becomes more like pebbles, then eventually small stones. This effect comes from the fact that fat cells continue to increase and get bigger.
“Patients often offer a set of common refrains: They started noticing that they had a different shape of their legs during puberty or adolescence; they always had heavier legs than their classmates; and when “They were trying to lose weight, their upper bodies were getting heavier and thinner but their legs stayed the same,” says Dr. Piazza.
Lipedema appears to be hereditary. And since almost all people with this condition are women, our hormones are thought to play a major role as well. Indeed, periods of hormonal upheaval such as pregnancy, menopause — and even taking the contraceptive pill — often correspond to a worsening of symptoms. “Patients usually notice big changes around these life events,” says Dr. Piazza.
Disruptive physical effects
Lipedema can be unsightly. But it also causes a myriad of physical effects, including pain and tenderness, particularly when pressure is applied to the skin; loose joints; difficulty walking; and easy bruising. Another potential consequence is the namesake lymphedema, an extreme swelling that occurs when the body’s lymphatic vessels are 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 that these symptoms can be very disruptive. “From a physical standpoint, pain and limited mobility sometimes prevent them from doing their jobs comfortably and even doing the daily activities they need to do,” says Dr. Piazza.
Due to a lack of research – and the fact that many doctors don’t understand this condition – some patients take years to receive an accurate diagnosis. Often, lipedema is confused with cellulite, a lumpy, dimpled fat that accumulates under the skin. But lipedema deposits aren’t just fat; they are also composed of connective tissue.
Lipedema is also often misinterpreted as obesity. But even though many people with lipedema carry extra pounds, lipedema doesn’t simply result from being overweight. “Obesity has a very complicated relationship with lipedema,” says Dr. Piazza.
“I tell my patients with lipedema that two big mistakes can be made in diagnosis and treatment: thinking of lipedema as just obesity or thinking of obesity as just lipedema,” he says. “Some patients have both, but we want to make sure we also address their obesity because it increases their risk of cardiovascular disease.”
The emotional damage of lipedema can be profoundAn occasional trip to the beach or pool is anything but for many women with lipedema, who attract stares from others due to the abnormal fat deposits that disproportionately cover parts of their body. “There is an element of shame in public places because of the disfigurement they might feel due to a smaller upper body and a larger lower body, causing them to avoid these places ” says Dr. Gregory Piazza, director of vascular medicine at Brigham and Women’s Hospital. . “The effects on self-esteem can be profound.” Dr. Piazza’s observations are reinforced by a study published in 2024 in the International Journal of Qualitative Studies in Health and Well-beingwhich looked at the experiences and consequences of 12 women living with lipedema. Researchers conducted extensive interviews with participants, who reported dramatic emotional challenges resulting from an “uphill and uncertain battle against a divergent body and societal ignorance.” But lipedema patients can feel misunderstood and harshly judged, even by their closest loved ones and friends, let alone strangers. To combat these forces, Dr. Piazza suggests the following strategies: Seek support. Finding other people with lipedema on social media or in dedicated support groups can counteract the urge to isolate. “Some women join advocacy groups and help others feel better,” says Dr. Piazza. “It can be very rewarding and fulfilling.” Be open. By talking to your friends and colleagues about your lipedema challenges, you will increase your chances of being accepted and supported. Educate others. Although it may seem intimidating, educating others about lipedema and its challenges can counteract harmful misinformation. “Many patients carry lipedema information created for patient groups, such as brochures,” he explains. THE Lipedema Foundation offers more information. |
An evolving set of treatments
Lack of awareness of lipedema is perhaps the greatest barrier to obtaining an accurate diagnosis. But once that hurdle is cleared, a physical exam alone often provides sufficient evidence to identify the disease.
There is no standard test to diagnose it, but imaging tests such as MRI, CT scan, and ultrasound can help doctors differentiate lipedema from other suspected problems, including lymphedema, diseases cardiovascular and an underactive thyroid, by measuring the thickness of the skin layers.
Although there is no cure, treatment for lipedema has evolved over the years to offer many approaches. Some aim to eliminate fatty deposits, while others target the symptoms. These options include
- support stockings or other clothing
- pneumatic devices that press on swollen areas
- manual lymphatic drainage, a type of massage that helps move fluids through the lymphatic channels
- medications to reduce inflammation and swelling
- liposuction
- exercise – especially swimming – which can reduce fluid accumulation and improve mobility.
Image: © Angela Cini/Getty Images