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What is lipedema?

Lipedema is a chronic condition that occurs almost exclusively in women and manifests as symmetrical buildup of painful fat and swelling in the limbs, sparing the hands and feet. 

For more on lipedema epidemiology, health burden, diagnosis, treatments, and research opportunities, please see Lipedema: A Giving Smarter Guide

 

What is the current state of lipedema research?

Although lipedema was first described in the 1940's, many research questions remain unanswered.

A critical issue is the poorly understood disease biology, which for diagnosed patients results in limited treatment options that, at best, relieve the symptoms of lipedema. Thus, more research is needed to determine and understand the biological processes affected in lipedema patients.

Individuals who suffer from the disease are further impacted by the absence of diagnostic tools, the lack of public and medical awareness of lipedema, and the stigma associated with weight gain. As a result, the true number of women with lipedema, or its epidemiology, is unknown.

For more about the Lipedema Foundation's Research Program

 

Diagnosis

Diagnosing lipedema involves taking the medical history and performing a physical examination of the affected individual.  As the field lacks a diagnostic test, clinicians consider multiple criteria to determine whether an individual has lipedema.

More about diagnosis

FDRS Diagnosing Lipedema: Interview and Physical Exam

 

Treatments

Women with lipedema face limited therapeutic options. Because the causes or drivers of disease onset remain unknown, currently available therapies are geared toward relieving symptoms and preserving patient health. 

More about treatments

FDRS: Goals of Lipedema Care and Treatments

Coding

ICD-11

EJ44 Lipoedema

ICD-10 2017 and German IDC-10

E88.2 Lipomatosis

E88.21 Lipedema, stage 1

E88.22 Lipedema, stage 2

E88.23 Lipedema, stage 3

E88.24 Lipedema, other

Historical ICD-10/9 codes

457.1 "lymphedema" if there is swelling component

782.3 "edema"

Q82.0 "hereditary lymphedema"

272.8 "lipomatosis" 

E65 "swelling" 

R60 "Oedema, not elsewhere classified"