Lipedema

What causes lipedema?

The cause of lipedema is unknown. The condition occurs almost entirely in females and often develops after puberty or other periods of hormonal change (such as pregnancy or menopause). Many people with lipedema are obese or overweight, however, normal weight individuals are also affected. Many people with lipedema have a family history of relatives with similarly enlarged legs. A genetic cause is suspected, but not confirmed.

Last updated on 05-01-20

How is lipedema diagnosed?

Lipedema is difficult to evaluate and diagnose and is best done by a medical professional who has expertise in the disorder. Imaging studies, such as ultrasound, MRI, lymphangiogram, and/or lymphoscintigraphy may be useful in diagnosing lipedema, although test results may appear 'normal' in the early stages of the disorder.

It is important to differentiate lipedema from other similar disorders including but not limited to: obesity, lipohypertrophy (a condition with similar signs and symptoms, but without pain and edema), and lymphedema (swelling caused by an abnormal pooling of fluids). In advanced cases, other causes of classic edema of the lower legs should be considered, such as chronic venous insufficiency (the veins have problems sending blood from the legs back to the heart), idiopathic edema, edema due to internal disease, and postural edema (collection of fluid in the feet and ankles after standing for a long time).

Classical guidelines for diagnosing lipedema include the following criteria: occurrence almost exclusively in women; bilateral and symmetrical presentation with minimal involvement of the feet; minimal pitting edema, pain, tenderness, and easy bruising; and persistent swelling of lower extremities despite elevation or weight loss. Updated guidelines propose a diagnosis of lipedema with the criteria as classically defined in addition to symptoms of the upper leg(s) and arm(s) such as a circularly thickened layer of fat affecting the skin.

Last updated on 05-01-20

How might lipedema be treated?

There is no one effective treatment for lipedema. Management to alleviate symptoms and prevent progression involves exercise, diet and nutrition, emotional support, and management of co-existing health problems that may cause leg-swelling. The main conservative treatment is complete decongestive therapy (also called complex decongestive therapy, or CDT). CDT combines several approaches including manual lymph drainage (a message technique), compression therapy, and physical mobilization. Surgery may be considered if conservative and supportive therapies are not effective. Surgical options may include liposuction using specialized techniques for lipedema (such as water jet-assisted liposuction) and excision (surgical removal of large deposits of affected tissue).

Last updated on 05-01-20

Healthcare Resources

Fat Disorders Research Society

The Fat Disorders Research Society has a Doctor Directory that lists physicians with knowledge of Lipedema.

Last updated on 04-27-20

Social Networking Websites

Yahoo groups - Lipedema

An online community providing support for those affected by lipedema
Web: Lipedema Lipodema Lipoedema Yahoo Group

Last updated on 04-27-20

Name: Lymphedema People Email: lymphedemapeople@aol.com Url: http://www.lymphedemapeople.com/wiki/doku.php?id=lipedema
Name: Fat Disorders Research Society PO Box 3014
Ridgefield, NJ, 07657, United States
Email: https://www.fatdisorders.org/contact Url: https://www.fatdisorders.org/
Name: Lipedema Foundation 39 Lewis St. 4th Floor
Greenwich, CT, 06830,
Phone: 203-489-2989 Email: info@lipedema.org Url: https://www.lipedema.org/

Connect with other users with Lipedema on the RareGuru app

Do you have information about a disease, disorder, or syndrome? Want to suggest a symptom?
Please send suggestions to RareGuru!

The RareGuru disease database is regularly updated using data generously provided by GARD, the United States Genetic and Rare Disease Information Center.

People Using the App

Join the RareGuru Community

To connect, share, empower and heal today.

People Using the App