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Lipedema


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Not a rare disease Not a rare disease

Categories:
Blood Diseases; Congenital and Genetic Diseases; Skin Diseases

Summary Summary


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Lipedema is a disorder characterized by symmetric enlargement of the legs due to deposits of fat beneath the skin. It is a common condition, occurring almost exclusively in women (affecting up to 11% of women). The cause of lipedema is unknown; however, there is evidence of hormonal and hereditary influences. Many people with lipedema have a family history of similarly enlarged legs. While there is no one effective treatment for lipedema, a number of therapies may be useful in managing symptoms.[1][2]
Last updated: 10/5/2016

Symptoms Symptoms


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Signs and symptoms of lipedema typically appear during puberty, pregnancy, or menopause. Symptoms vary from person to person, but usually include abnormal deposits of body fat in both legs, extending from the buttocks to the ankles.[3] This often painful disorder usually worsens gradually, although some individuals develop minor lipedema that stabilizes.[4] In the early stages of lipedema, most individuals have a normal appearance above their waist. As the disorder progresses, the chest, torso, abdomen, and upper extremities may also become enlarged.[3]

The skin overlying the affected areas usually appears normal, although it may lose elasticity. People with lipedema tend to bruise easily, possibly due to the increased fragility of small blood vessel within the fat tissue.[3][2]

Last updated: 10/5/2016
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Cause Cause


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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.[1][3]
Last updated: 10/5/2016

Diagnosis Diagnosis


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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.[2][3][4]

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).[2][3][4]

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.[5] 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.[4]
Last updated: 10/5/2016

Treatment Treatment


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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.[6] 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.[4][7][8] 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).[4][6]
Last updated: 2/28/2019

Research Research


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Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

  • ClinicalTrials.gov lists trials that are related to Lipedema. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

    Please note: Studies listed on the ClinicalTrials.gov website are listed for informational purposes only; being listed does not reflect an endorsement by GARD or the NIH. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.

Patient Registry

  • A registry supports research by collecting of information about patients that share something in common, such as being diagnosed with Lipedema. The type of data collected can vary from registry to registry and is based on the goals and purpose of that registry. Some registries collect contact information while others collect more detailed medical information. Learn more about registries.

    Registries for Lipedema:
    Lipedema Foundation Registry
     

Organizations Organizations


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Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

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

Social Networking Websites

  • An online community providing support for those affected by lipedema
    Web: Lipedema Lipodema Lipoedema Yahoo Group
Do you know of an organization? We want to hear from you.

Learn More Learn More


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These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

  • DermNet NZ is an online resource about skin diseases developed by the New Zealand Dermatological Society Incorporated. DermNet NZ provides information about this condition.

In-Depth Information

  • Orphanet is a European reference portal for information on rare diseases and orphan drugs. Access to this database is free of charge.
  • PubMed is a searchable database of medical literature and lists journal articles that discuss Lipedema. Click on the link to view a sample search on this topic.

Selected Full-Text Journal Articles

  • Herbst KL. Subcutaneous Adipose Tissue Diseases: Dercum Disease, Lipedema, Familial Multiple Lipomatosis, and Madelung Disease. [Updated 2019 Dec 14]. In: Feingold KR, Anawalt B, Boyce A, et al., editors. Endotext [Internet]. South Dartmouth (MA): MDText.com, Inc.; 2000-.

GARD Answers GARD Answers


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Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know.

Have a question? Contact a GARD Information Specialist.

References References


  1. Fonder MA, Loveless JW, Lazarus GS. Lipedema, a frequently unrecognized problem. J Am Acad Dermatol. 2007; 57 (2 Suppl):S1-3. http://www.ncbi.nlm.nih.gov/pubmed/17637360.
  2. Amanda Oakley. Lipoedema. DermNet NZ. 2008; http://dermnetnz.org/dermal-infiltrative/lipoedema.html. Accessed 10/5/2016.
  3. Lipedema. Fat Disorders Research Society. https://www.fatdisorders.org/lipedema/. Accessed 10/5/2016.
  4. Anne B Halk, Robert J Damstra. First Dutch guidelines on lipedema using the international classification of functioning, disability and health. Phlebology. April 12 2016; http://www.ncbi.nlm.nih.gov/pubmed/27075680.
  5. LESTER E. WOLD, EDGAR A. HINES, EDGAR V. ALLEN. LIPEDEMA OF THE LEGS: A SYNDROME CHARACTERIZED BY FAT LEGS AND EDEMA. Annals of Internal Medicine. 1951; 34(5):http://www.ncbi.nlm.nih.gov/pubmed/14830102.
  6. Canning C, Bartholomew JR. Lipedema. Vasc Med. February, 2018; 23(1):88-90. https://www.ncbi.nlm.nih.gov/pubmed/29143577.
  7. Jean-Phillip Okhovat, Afsaneh Alavi. Lipedema A Review of the Literature. The International Journal of Lower Extremity Wounds. Sep 2015; 14(3):262-7. http://www.ncbi.nlm.nih.gov/pubmed/25326446.
  8. Wollina U. Lipedema—An update. Dermatol Ther. December 18, 2018; [Epub ahead of print]:https://onlinelibrary.wiley.com/doi/full/10.1111/dth.12805.
Do you know of a review article? We want to hear from you.
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