What is Lipedema?

By:    Medically Reviewed: Tom Iarocci, MD   Published: August 14, 2014

The misunderstood disease of stray fatty deposits swelling across the body is often misdiagnosed as obesity.

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For women whose body fat is distributed disproportionately in their legs, it may be a condition that’s sometimes referred to as lipedema.

Lipedema is often incorrectly attributed to simple obesity, and for women with lipedema, this may be part of the frustration, since losing weight may not help. Abnormal fatty deposits that characterize lipedema (most often from the hips down to the ankles), don’t respond to merely dropping pounds. In fact, when sufferers lose weight, they tend to lose it from other areas and when they gain it, they gain it in the areas already swelled with fat, making the body look even more disproportionate.

Lipedema tends to run in the family and is sometimes called painful fat syndrome. “The disproportion in the fat distribution is one of the hallmarks of the disease,” says researcher Karen Herbst, MD, PhD, associate professor of medicine, division of endocrinology at the University of Arizona Medical Center. “It typically accumulates on the hips, buttocks, thighs and ankles, but the upper body and the feet will be completely normal.”

 

Causes of Lipedema

Although this disease is still not completely understood, both genetics and hormones are thought to play a role in the development of lipedema. Researchers in Europe (where they refer to the condition as lipoedema) are currently investigating the genetic connection, and the possibility that there’s a link to an obesity gene. It is commonly passed from mothers to daughters, so someone whose mother suffers from lipedema does have a much higher risk of developing the disease herself.

“We think that estrogen likely plays a role in lipedema, because puberty and pregnancy [both times when estrogen surges] contribute to its development,” says Herbst. “But some women also get worse at menopause — when estrogen drops — so we know the hormonal connection is more complicated.”

 

Symptoms of Lipedema

Although lipedema often goes undiagnosed or misdiagnosed, there are several key symptoms that are tip-offs to this disease, say experts. These include:

  • Painful fat: The areas of fat will be tender to the touch and there may also be aching and burning.
  • Easy bruising: It’s common for areas affected by lipedema to bruise more easily than other areas of the body.
  • Fatty deposits unaffected by diet or exercise: You will notice weight loss in other areas, but the lipedema fat will be unchanged.
  • Fat may look different: There’s some evidence that the lipedema-affected tissue is different from healthy tissue. “There is greater variation in the size of the fat cells and more space between the cells,” says Herbst.
  • Cuff of fat at ankle: The legs will both be very large and column-like, but the feet will appear normal.

 

It’s also important to note that not all cases follow the typical pattern. Many patients have lipedema in their arms or they may have it in just one area that is easily missed by a doctor who doesn’t do a full-body exam. “If you don’t have classic symptoms, it can be even more difficult and confusing to diagnose,” she says. 

Next Steps

For Patients

There is no cure for those who have the disease, but here are some tips.

  • Note family history. Those whose mothers suffer from lipedema can try to help keep this condition at bay by taking a few precautions. A diet low in processed carbohydrates, maintaining a healthy weight, and regular exercise (to keep the tissues healthy) are all important.
  • Consider lymphatic massage. Although lipedema is not lymphedema, there can be involvement of the lymphatic system (which helps drain fluid from tissues) and a woman can have both lipedema and lymphedema, so manual lymphatic drainage massage may help in some cases.

For Family Caregivers

Help your loved one consider the options. A technique called tumescent liposuction is producing results by removing lipedema fat and the diseased tissue so that the body doesn’t produce more lipedema fat. Ask  about the procedure and talk to the doctor about which options make sense given the big picture. 

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