What is Lipedema?

Lipedema (lipoedema in Europe, and lipodem in Germany) is a little known and generally under-recognized fat disorder that affects approximately 11% of women worldwide. Typically there is disproportionate fat distribution, a smaller upper body and a larger lower body with thick, column-like legs. Without treatment, lipedema progresses with hormonal disturbance, (puberty, pregnancy, perimenopause) and affected areas grow larger and heavier, often accompanied with increasing pain and bruising. As the fat increases, the fat cells block the vessels of the lymphatic system preventing the lymphatic fluid from processing through the body. A build up of lymphatic fluid creates a blockage that prevents the proper drainage of lymph fluid. This condition is called lymphedema.

Lipedema has 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 seriously underweight to the morbidly obese
4) 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
5) unlike the “normal” fat of obesity, lipedemic fat cannot be lost through diet and exercise

Who is Affected?

Lipedema, also called “painful fat syndrome,” predominantly affects women, though a few rare cases are seen in men. Believed to be hormonal in nature, lipedema usually is triggered at puberty, but can trigger or worsen during or after pregnancy, at perimenopause, and following gynecological surgery or any surgery with anesthesia. Estimates of the incidence of lipedema vary widely, and range as high as 11% of the post-puberty female population. That would mean close to 17 million women in the United States alone and over 350 million worldwide.

What Does Lipedema Look Like?

Lipedema shows up primarily as disproportionately large, column-like legs. As it progresses, patients become increasingly heavy in the lower body. Typically there is abnormal bilateral and symmetrical swelling of the legs and hips that extends down towards the ankles where the fat forms a ring just above the ankle. This swelling is due to accumulations of fat and fluid in the tissues under the skin. Fatty bulges can be seen on the outer surfaces of the thighs and sometimes the upper arms are affected as well. Interestingly enough, the swelling often extends from the waist down, almost in a distinct line toward the ankles, with the feet remaining unaffected. The additional expanding fat cells interfere with the pathways of lymphatic vessels, and patients can develop secondary lymphedema, a condition known as lipolymphedema.

Poorly Understood Disease

Until recently, very few have even heard of lipedema, especially in the United States. Lipedema is a poorly understood disease globally, but even more so in the United States; statistics show it is markedly under-diagnosed in this country.

If untreated, lipedema can cause multiple health problems leading to immobility. Lipedema fat can be very painful, and if not kept in check through a healthy lifestyle, the condition can worsen and patients can become progressively less mobile. The quality of life for a lipedema patient is often compromised both physically and emotionally. The disease is typically dismissed as simple obesity. Lipedema fat cannot be exercised or even starved away. It may be possible to limit the effects of lipedema, through careful weight management, if diagnosed early enough.

What more can be done? The documentary The Disease They Call FAT and this website attempts to explore just this question.