About Lipedema

What is lipedema?

Lipedema is a chronic condition that occurs almost exclusively in women and manifests as symmetrical buildup of often-painful fat in the limbs, sparing the hands and feet. It may also affect the lower trunk, and some patients/clinicians have reported Lipedema tissue accumulation in other areas such as the face/scalp.

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.

In 2023, the Lipedema Foundation published the Research Roadmap. The Roadmap identifies recommendations to strengthen and expand Lipedema research, enhance knowledge, reduce barriers, facilitate exchange of ideas, and advance best practices. It compiles input from more than 60 global stakeholders, including forward-thinking clinicians, researchers, and patients.

Where can I find Information on diagnosis and management?

Click the buttons below to be directed to our diagnosing page, treatments page, and resources page to find more information on how Lipedema is identified and managed.

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.