About Lipedema
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
Videos on Diagnosing Lipedema: Interview and Physical Exam
Resources:
A compilation can be found on our Resources page
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.
Coding:
The International Classification of Diseases (ICD) is a set of codes that allow healthcare professionals to record standardized health information across countries. Periodically, the World Health Organization releases updated codes. In the United States, the codes currently in use are ICD-10 codes.
ICD-10
Clinicians report that the most frequently used ICD-10 codes for Lipedema are:
R60.9 - Swelling/edema
E88.2 - Lipomatosis, not elsewhere classified
E65 - Adiposity, localized
Other codes sometimes used include:
Q82.0 - Chronic hereditary edema/lymphedema
More information, including nuanced discussion of differences in use of codes across medical specialties, can be found here.
ICD-11 (Not yet implemented in the United States)
The 11th revision (ICD-11), adopted in 2019, includes for the first time a specific global ICD code for Lipedema:
EF02.2 Lipoedema (international spelling)
ICD-11 codes came into effect on January 1, 2022. However, each country is responsible for adopting and implementing the new revision of the codes within its own health system.
As of May 2022, 35 countries have begun using ICD-11 codes, not yet including the United States.
ICD-10 - Germany
In Germany, the Federal Institute for Drugs and Medical Devices (BfArM) has adopted several specific ICD-10 codes for Lipedema. These codes are not in use in the United States.
E88.21 Lipedema, stage 1
E88.22 Lipedema, stage 2
E88.23 Lipedema, stage 3
E88.24 Lipedema, other
Other Historical ICD-10/9 codes
457.1 "lymphedema" if there is swelling component
782.3 "edema"
272.8 "lipomatosis"
E65 "swelling"
R60.0 "Oedema, not elsewhere classified"
RENAMING LIPEDEMA?
Many in the Lipedema patient community report that their health care providers confuse Lipedema with other conditions with similar-sounding names, including lymphedema, hyperlipidemia (high cholesterol), and others. For this reason, there have been proposals to change the name of Lipedema to a more distinct name. Proposed alternatives have included Refractory Adipose Storage Syndrome (RASS), lipalgia, lipoedema (the spelling used in Australia and the UK - sometimes pronounced "Lipo-edema"), and Painful Fat Syndrome. This debate is ongoing and the currently accepted name of the condition in English is Lipedema.