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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Lipedema

*

* Not a rare disease

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Your Question

Do you have any cures for lipedema? I need a cure and so do others.

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What is lipedema?

Lipedema is a syndrome characterized by symmetric enlargement of the legs due to deposits of fat beneath the skin, which is often painful.  It is a common condition affecting up to 11% of women  The underlying cause is currently unknown; however many people with lipedema have a family history of similarly enlarged legs. Hormones are also thought to play a role.[1][2]
Last updated: 7/12/2011

What are the signs and symptoms of lipedema?

Signs and symptoms of lipedema include enlarged legs extending from the buttocks to the ankles. This enlargement can be painful. The size of the legs are typically out of proportion to the upper body (despite the individual’s BMI). The feet are much less involved or spared entirely. In lipedema, the skin does not appear warty, hard (sclerotic), or discolored. Lipedema is not thought to predispose a person to ulcer development.[1] People with lipedema may tend to bruise easily, possibly due to increased fragility of small blood vessel within the fat tissue.[3]
Last updated: 7/12/2011

What causes lipedema?

The cause of lipedema is unknown. Hormones appear to play a role, especially considering that the condition occurs almost entirely in females and often develops after puberty or other periods of hormone change (e.g., pregnancy, menopause). Although people who are obese may be overrepresented among those with lipedema, persons of normal weight are also commonly affected. As a result, obesity alone is unlikely to be a major determinant of this syndrome. Many people with lipedema have a family history of similarly enlarged legs. At this time the role of genetics in the causation of lipedema is unknown.[1]
Last updated: 7/12/2011

How is lipedema different from lymphedema?

The leg enlargement in lipedema is caused by the build up of fatty deposits. Lymphedema is not due to a build up of fatty deposits, but of protein rich fluid due to a problem with the body’s lymphatic system. This build up of fluid causes swelling. Unlike lymphedema, lipedema responds poorly to compression therapy. Also lipedema causes few skin changes and the “Stemmer’s sign” is absent. Stemmer’s sign refers to the presence of a skin fold too thick to pinch at the base of the second toe.[1]

However, overtime people with lipedema may develop problems with their lymphatic system and as a result develop in addition to the lipedema, lymphedema. These superimposed conditions may be refered to as “lipolymphedema.” In these cases the person’s skin may become firm and nodular, and their feet (which were formerly spared) may become swollen and show evidence of the Stemmer’s sign.[1]
Last updated: 7/12/2011

How might lipedema be treated?

Treatment options for lipedema are limited. A number of therapies that have been tried with minimal success include dieting, diuretics, leg elevation, and compression. Invasive treatments such as lipectomy or liposuction are not recommended because they risk causing damage to the lymphatic system. While, compression therapy may not do much to improve the lipedema, it may help prevent worsening and progression to lymphedema (lipolymphedema).[1]
Last updated: 7/12/2011

Are there any research studies looking for new treatments for lipedema?

We are not aware of research studies investigating new therapies or treatments for lipedema at this time. The National Institutes of Health, through the National Library of Medicine, developed ClinicalTrials.gov to provide patients, family members, and members of the public with current information on clinical research studies. You may find it helpful to check this site periodically for updates. To search for a study, use "Lipedema" as your search term.

You can also contact the Patient Recruitment and Public Liaison (PRPL) Office at the National Institutes of Health (NIH). We recommend calling the toll-free number listed below to speak with a specialist, who can help you determine if you are eligible for any clinical trials.

Patient Recruitment and Public Liaison Office (PRPL)
NIH Clinical Center
Bethesda, Maryland 20892-2655
Toll-free: 800-411-1222
Fax: 301-480-9793
Email: prpl@mail.cc.nih.gov
Web site:  http://clinicalcenter.nih.gov/

If you are interested in enrolling in a clinical trial, you can find helpful general information on clinical trials at the following ClinicalTrials.gov Web page.
http://clinicaltrials.gov/ct2/info/understand

Resources on many charitable or special-fare flights to research and treatment sites and low-cost hospitality accommodations for outpatients and family members, as well as ambulance services, are listed on the Web site of the Office of Rare Diseases Research (ORDR), part of the National Institutes of Health.
http://rarediseases.info.nih.gov/Resources.aspx?PageID=8
Last updated: 7/12/2011

References
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.