Lipedema is a relatively common fat disorder that is often mistaken for simple obesity. Its clinical diagnosis is an adipose tissue disorder or a lipid metabolism disorder. A typical lipedema patient is a woman who struggles with large hips and legs, usually out of proportion to the rest of her body. Lipedema also appears in the upper arms. One of the hallmarks of the disease is that lipedema fat is relatively unresponsive to diet and exercise. These measures may lead to weight loss in other areas, but the size of the hips and legs remains disproportionately large.
Lipedema is both an excess buildup of fat cells in a particular area, and the expansion of those fat cells. Swelling in the interstitial fluid between cells may increase during the day in patients with lipedema, but does not usually cause “pitting edema.” Patients often complain of tenderness or pain in the fat, and report that they are easily bruised. Lipedema is little recognized in the United States medical community, and many women go undiagnosed for years.
- Lipedema’s trademark is the excess deposition and expansion of fat cells in an abnormal and particular pattern in the legs. There is usually bilateral and symmetrical (both legs, fairly even) swelling of the legs and hips extending from the waist to the ankles, with the fat forming a ring or cuff just above the ankle. The feet are usually unaffected. Lipedema may occur in the upper arms as well.
- Lipedema occurs almost exclusively in women. There are a few rare cases where lipedema has been diagnosed in men.
- Lipedema fat is resistant to diet and exercise. Although diet and exercise can help both pain and mobility, they are unlikely to change the disproportionate size of the legs or arms for lipedema patients in any significant way.
- Lipedema can occur in women of all sizes, ranging from seriously underweight to morbidly obese. Being thin is not a guarantee that someone does not have lipedema.
- Lipedema seems to have a genetic component. In some families it is inherited through a maternal lineage, so a grandmother, mother, and daughter might all have lipedema. Males can be carriers, so daughters can also inherit from a paternal lineage.
- Lipedema is thought to be affected by hormones. Some women see the first signs of lipedema around puberty. Others first show symptoms around pregnancy or perimenopause. Cases of lipedema have also appeared following gynecological surgery or after major trauma or surgery. These triggers are predominantly periods of major stress and/or high hormonal disturbance.
- Lipedema is more common than you think. Estimates of the incidence of lipedema vary widely, ranging as high as 11% of the post-puberty female population. That would mean close to 17 million women in the United States alone, and as many as 350 million women worldwide.
Lipedema is a progressive disease with four stages. Not all patients have lipedema that worsens over time, but many do. Proper diagnosis and treatment for lipedema can prevent or slow the progression, help retain mobility and decrease pain.
1. Skin is smooth
2. Swelling increases during the day and may resolve with rest and elevation
3. Responds well to treatment
1. Skin has indentations
2. Lipomas may develop
3. Swelling increases during the day, with less resolution after rest and elevation
4. May also have tenderness
1. Skin has an irregular surface and fat feels more nodular
2. Large masses of skin and fat create overhanging folds
3. Pain symptoms tend to increase and immobility may develop
1. Lymphedema present
2. Swelling consistently present
3. Larger masses of skin and fat that overhang
4. Also known as lipolymphedema
About The Friedman Center
The Friedman Center for Lymphedema Research and Treatment at The Center for Advanced Medicine at Northwell Health in New York was founded in 2013. Its focus has been on offering solutions for patients with lymphedema, a debilitating condition that occurs in many patients after cancer treatment.
The Friedman Center’s scope of care now includes treatment for lipedema, a condition that can also result in lymphedema. To that end, the Friedman Center has created the Lipedema Project, a comprehensive program to increase awareness and provide education, research and treatment for lipedema. The Friedman Center is proud to sponsor the lipedema documentary, The Disease They Call FAT, the 1st International Symposium on Lipedema, the Lipedema Think Tank, the Lipedema Solutions Forum for women with lipedema in April 2015 and this online CME eduring materials course for physicians.