Lipedema: The Fat-Storing Disease Immune to Diet and Exercise

Imagine gaining weight and, regardless of your diet or exercise habits, you're unable to lose those pounds. Sadly, this scary thought has become the unfortunate reality for approximately 11 percent of the female population.

Approximately 11 percent of the female population suffer from lipedema. (Image: Milos Dimic/iStock/GettyImages)
Lipedema is a fat-storage disease. (Image: livestrong)

What is lipedema?

Often mistaken for obesity or unusual weight gain, lipedema is a fat-storage disease that almost exclusively affects women. Striking 17 million women in the United States (and 370 million women worldwide), lipedema usually occurs after puberty or during a person's 20s.

This chronic disorder affects the legs and arms, causing an abnormal accumulation of fat cells that produce a noticeably disproportionate appearance. There's a genetic component in approximately half of all lipedema cases, and it's not just being overweight or out of shape -- it's truly a disproportion in the affected areas of the body. It's a condition that is not only an overgrowth of fat tissue, but it also has a vascular or lymphatic component with swelling.

What are the symptoms?

Lipedema causes swelling in the legs and develops the appearance of tree-like, column-like legs. It appears as disproportionate fat storage with a lot of excess swelling (also known as non-pitting edema). In addition to the swelling, patients also exhibit common symptoms such as tenderness, numbness, pain and bruising.

These patients not only suffer from the aesthetic effects of the disease, but they also suffer in terms of their lifestyles. As these symptoms get increasingly worse, they begin to affect the patient's mobility and quality of life, causing decreased ability to move, which usually affects their ability to exercise too. At later stages of the disease, some patients can even be put in wheelchairs or become bedridden.

Since lipedema is relatively unknown, it's often misdiagnosed. Many doctors will diagnose patients as obese and advise them to lose weight. One thing many doctors don't know, however, is that lipedema is resistant to diet and exercise -- the areas of the body affected by lipedema will not change without proper treatment. These misdiagnosed patients continue to live their lives coping with a stigma of obesity, as their symptoms progressively worsen and weight continues to pile on.

Can lipedema be treated?

Aside from constantly being misdiagnosed, many lipedema patients are told there's no real cure for the disease. The mainstay of medical treatment has been using medications to help reduce the inflammation, swelling and discomfort these patients may endure.

Other noninvasive therapies -- such as compression therapy, which involves compression pumps or manual lymphatic drainage (MLD) -- are only temporary. While these therapies can temporarily relieve the symptoms of lipedema, they are not really changing the underlying, long-term disease process.

The only real possible cure is liposuction. This procedure surgically removes the diseased fat tissue from the body. However, it's not typical liposuction surgery. Many surgeons are reluctant to perform liposuction for lipedema because the affected areas are very difficult to treat. The calves, ankles and anterior thighs are areas most surgeons who do liposuction tend to avoid even in non-lipedema patients. Because these areas are very prone to irregularities and are technically very difficult to treat, it's essential someone with extensive experience perform the surgery.

After removing the fat tissue through liposuction surgery, the swelling in these patients is greatly reduced. They quickly experience a resolution of their symptoms, such as the chronic pain and discomfort they previously endured.

Lipedema is a very under-recognized condition that affects millions of women across the globe, and I hope to further advance both the knowledge and awareness of lipedema among the medical community and general public.

Written by Dr. David Amron

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