Lipedema

Common Name(s)

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.
 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Lipedema" for support, advocacy or research.

Fat Disorders Research Society

FDRS is dedicated to improving the quality of life for all people affected by adipose tissue disorders such as lipedema, lipoedema, Dercum's Disease, Madelung's Disease and Familial Multiple Lipomatosis, through research, education, advocacy and collaboration.

Last Updated: 9 Mar 2015

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Lymphatic Education & Research Network

Our Mission is to fight lymphatic disease and lymphedema through education, research and advocacy. We seek to accelerate the prevention, treatment and cure of the disease while bringing patients and medical professionals together to address the unmet needs surrounding lymphatic disorders.

Last Updated: 14 May 2014

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National Lipedema Association

To educate medical providers and patients about lipedema, and to promote research that benefits lipedema patients.

Last Updated: 20 Jan 2013

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General Support Organizations

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How do you compare to others with this condition?

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Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Lipedema" for support, advocacy or research.

Fat Disorders Research Society

FDRS is dedicated to improving the quality of life for all people affected by adipose tissue disorders such as lipedema, lipoedema, Dercum's Disease, Madelung's Disease and Familial Multiple Lipomatosis, through research, education, advocacy and collaboration.

http://www.fatdisorders.org

Last Updated: 9 Mar 2015

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Lymphatic Education & Research Network

Our Mission is to fight lymphatic disease and lymphedema through education, research and advocacy. We seek to accelerate the prevention, treatment and cure of the disease while bringing patients and medical professionals together to address the unmet needs surrounding lymphatic disorders.

http://www.lymphaticnetwork.org

Last Updated: 14 May 2014

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National Lipedema Association

To educate medical providers and patients about lipedema, and to promote research that benefits lipedema patients.

http://www.lipedema.org (2005)

Last Updated: 20 Jan 2013

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General Support Organizations

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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Lipedema" returned 2 free, full-text research articles on human participants. First 3 results:

Evaluation of patient-relevant outcomes of lymphedema and lipedema treatment: development and validation of a new benefit tool.
 

Author(s): C Blome, M Augustin, K Heyer, J Knöfel, H Cornelsen, S Purwins, K Herberger

Journal: Eur J Vasc Endovasc Surg. 2014 Jan;47(1):100-7.

 

Patient-relevant treatment benefit is traditionally measured with health-related quality of life (HRQoL) instruments. The Patient Benefit Index (PBI) methodology allows for a more direct measurement, with the patients rating both importance and achievement of treatment goals. Here, ...

Last Updated: 31 Dec 1969

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Lipedema with multiple lipomas.
 

Author(s): Anabella Pascucci, Peter J Lynch

Journal:

 

Lipedema is an underdiagnosed syndrome of unclear etiology, characterized by symmetric painful enlargement of the buttocks and lower extremities, which spares the feet. This enlargement is caused by the deposition of adipose tissue. It was first described by Allen and Hines in 1940, ...

Last Updated: 31 Dec 1969

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Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Lipedema" returned 1 free, full-text review articles on human participants. First 3 results:

Thick legs - not always lipedema.
 

Author(s): Stefanie Reich-Schupke, Peter Altmeyer, Markus Stücker

Journal: J Dtsch Dermatol Ges. 2013 Mar;11(3):225-33.

 

Due to its increased presence in the press and on television, the diagnosis of lipedema is on the way to becoming a trendy diagnosis for those with thick legs. Despite this, one must recognize that lipedema is a very rare disease. It is characterized by disproportional obesity of ...

Last Updated: 31 Dec 1969

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Symptoms, Diagnosis, and Treatment

There are currently no related results available in Genetics Home Reference.

There are currently no related results available in GeneReviews.

There are currently no related results available in Genetic Testing Registry.

 
 
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Clinical Trial Information This information is provided by ClinicalTrials.gov

Effect of Weight Loss on Body Composition and Metabolic Function in Women With Lipedema
 

Status: Not yet recruiting

Condition Summary: Lipedema; Metabolism

 

Last Updated: 31 Aug 2017

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Evaluation of Safety and Efficacy of RZL-012 for the Treatment of Lipedema or of Nodular Dercum's Disease
 

Status: Not yet recruiting

Condition Summary: Lipedema; Dercum Disease

 

Last Updated: 8 Apr 2018

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Insight Into Subcutaneous Adipose Tissue Disorders
 

Status: Recruiting

Condition Summary: Lipedema; Dercum's Disease; Familial Multiple Lipomatosis; Madelung's Disease

 

Last Updated: 14 Sep 2017

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