Lipedema

Lipedema is a disorder of adipose tissue distinguished by five characteristics: 1) it can be inherited; 2) it occurs almost exclusively in women; 3) it can occur in women of all sizes, from the anorexic to the morbidly obese; 3) it involves the excess deposit and expansion of fat cells in an unusual and particular pattern – bilateral, symmetrical and usually from the waist to a distinct line just above the ankles; and 4) unlike the “normal” fat of obesity, lipedemic fat cannot be lost through diet and exercise. Surgery is highly controversial, and in many cases, can make the condition worse.

Lipedema usually is triggered at puberty, but can trigger or worsen during or after pregnancy, at peri-menopause, and following gynecological surgery. If lipedema is diagnosed early, which currently is very rare, it is possible to prevent a significant expansion of lipedemic fat cells, and to alert patients to their heightened risk for obesity so they can take appropriate action.

Estimates of the incidence of lipedema vary widely, and range as high as 11% of the post-puberty female population. Even if the number were only 5%, that would mean more than 6 million women in the United States alone.

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Symptoms

Patients tend to gain weight in lipedemic areas and lose it in non-lipedemic areas. Obese lipedema patients who undergo bariatric surgery lose fat primarily from the waist up. Even anorexic women can starve and exercise away "normal" fat but retain lipedemic fat.

The classic early-stage lipedemic profile is a woman who looks like a size 8 from the waist up and a size 16 from the waist down with disproportionately large, column-like legs. As lipedema progresses, patients become increasingly heavy in the lower body. The additional, expanding fat cells interfere with the pathways of lymphatic vessels, and patients can develop secondary lymphedema, a condition known as lipo-lymphedema. Many lipedema patients cannot tolerate the compression garments associated with conventional lymphedema treatment because the underlying lipedemic fat is very painful, and those patients therefore are at risk for the side effects of uncontrolled lymphedema, including recurring blood infections and fibrosis.

Women with lipedema also are at very high risk for obesity because the lipedemic fat cannot be lost, and because as the condition worsens, patients become progressively less mobile.

Treatment

Treatment is designed primarily to address the secondary lymphedema part of the lipedema patient’s condition. This treatment includes a course of manual lymphatic drainage and bandaging by a lymphedema therapist, followed by the wearing of custom-fitted compression garments or devices - usually stockings and sometimes biker shorts. Compression prevents recurrence of lymphedema, and in some lipedema patients can reduce the pain of lipedemic fat.

There is no cure for lipedema.

History

Although first identified in the United States, at the Mayo Clinic in 1940, lipedema is barely known in that country – to physicians or to the patients who have the disease. Lipedema often is confused with obesity, and a significant number of patients currently diagnosed as obese are believed to have lipedema, either instead of or in addition to obesity.

Lipedema has multiple spellings. "Lipedema" is the American spelling, while "Lipoedema" is used in Britain and Europe. "Lipodema" is also used occasionally.

References

• Interview with the Founder and President of the National Lipedema Association
• "Lipedema: What Do We Know?" by Professor Horst Weissleder, MD
• "Lipedema," on the web site of Lymphedema Therapy, Woodbury, New York
• Lipedema and Lymphedema compared
• National Lipedema Association
• A Lipedema patient's informative website
• Xanga Lipedema blog