Lipedema

Title

Not a rare disease

Categories:

Blood Diseases; Congenital and Genetic Diseases; Skin Diseases

Summary Summary

Lipedema is characterized by increased enlargement of both legs due to deposits of fat beneath the skin. Symptoms of lipedema usually occur in women and begin around times of hormonal change, such as puberty or menopause. Symptoms may include enlargement of the upper legs, arms, pain, and easy bruising. The cause of lipedema is unknown. Many people with lipedema have a family member with lipedema, and it is likely that genetic factors are involved. Diagnosis is based on the symptoms and a clinical exam. Other more common conditions may need to be ruled out before lipedema is diagnosed. Treatment of lipedema is focused on managing the symptoms and includes both non-surgical and surgical methods.^[1]^[2]^[3]

Last updated: 2/12/2021

Symptoms Symptoms

The following list includes the most common signs and symptoms in people with lipedema. These features may be different from person to person. Some people may have more symptoms than others and they can range from mild to severe. This list does not include every symptom that has been described in the condition.

Symptoms of lipedema may include:^[2]^[3]^[4]

Abnormal fat deposits in both legs
Easy bruising
Pain
Loose skin

Symptoms of lipedema usually begin during puberty, pregnancy, or menopause. The fat deposition usually gets worse over time, although some people develop a stable form of this condition. In the early stages of lipedema, most individuals have a normal appearance above their waist. Over time, the chest, torso, abdomen, and upper extremities may also become enlarged. Some people with lipedema have depression or have trouble coping emotionally.^[5]^[3]

Last updated: 2/12/2021

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Cause Cause

The cause of lipedema is unknown. It is suspected that both hormonal and genetic factors are involved.^[1]^[2]

Last updated: 2/12/2021

Diagnosis Diagnosis

Lipedema is diagnosed based on the symptoms and clinical examination. Imaging studies, such as ultrasound, MRI, lymphangiogram, and/or lymphoscintigraphy may be useful in diagnosing lipedema. Other conditions may need to be excluded before a diagnosis can be made.^[6]^[2]

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.[12005] 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.^[6]^[2]

Last updated: 2/12/2021

Treatment Treatment

Treatment for lipedema is focused on managing the symptoms. 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.^[7]^[4] 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.^[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).^[7]^[2]

Last updated: 2/28/2019

Research Research

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

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/

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

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

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

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.
Kruppa P, Georgiou I, Biermann N, Pranti L et al. Lipedema- pathogenesis, diagnosis, and treatment options. Dtsch Arztebl Int. Jun 1, 2020; 117(22-23):396-403. https://pubmed.ncbi.nlm.nih.gov/32762835/.
Bauer AT, von Lukowicz D, Lossagk K, Aitzetmueller M, Moog P et al. New insights on lipedema: The enigmatic disease of the peripheral fat. Plast Reconstr Surg. Dec 2019; 144(6):1475-1484. https://pubmed.ncbi.nlm.nih.gov/31764671.
Wollina U. Lipedema- an update. Dermatol Ther. Mar 2019; 32(2):e12805. https://pubmed.ncbi.nlm.nih.gov/30565362.
Lipedema. Fat Disorders Research Society. https://www.fatdisorders.org/lipedema/. Accessed 10/5/2016.
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.
Canning C, Bartholomew JR. Lipedema. Vasc Med. February, 2018; 23(1):88-90. https://www.ncbi.nlm.nih.gov/pubmed/29143577.
Wollina U. Lipedema—An update. Dermatol Ther. December 18, 2018; [Epub ahead of print]:https://onlinelibrary.wiley.com/doi/full/10.1111/dth.12805.
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.