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.
ICD-10 2017 and German IDC-10
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
Q82.0 "hereditary lymphedema"
R60 "Oedema, not elsewhere classified"
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.
General resources are on our Resources page
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.