What is Lipedema?

Lipedema is a chronic medical condition that primarily affects women characterized by bilateral, symmetric buildup of adipose tissue (fat) in the legs, and sometimes the arms and lower trunk. A common but under-recognized disorder, Lipedema may cause pain, tenderness, swelling, and easy bruising. It may be accompanied by an unusual nodular and/or fibrotic texture within the fat that can feel like rice, peas, or walnuts beneath the surface of the skin. The intensity of pain may range from none to severe, and its frequency may be constant, intermittent, or only occur when the fat is palpated. Limited public awareness of Lipedema, coupled with few research-backed treatments, can lead to exacerbation of symptoms as well as physical and emotional distress.

Lipedema primarily affects females, with rare reports of development in men. Although believed to be prevalent, the exact incidence is not known.

The causes of Lipedema are not well understood. It is reported to start or worsen during puberty and other periods of hormonal changes, such as pregnancy and menopause. Research is underway to determine the biological role of hormones, genetics, inflammation, and metabolism in the condition’s development.

• Bilateral, symmetrical buildup of fat in the legs, and sometimes arms and lower trunk, that is resistant to nutritional intervention, exercise, elevation, diuretics, and bariatric surgery 
• Feet/hands are typically spared, sometimes causing the appearance of an ankle or wrist “cuff” 
• Almost exclusively affects women 
• Complaints of pain, tenderness, heaviness in affected areas 
• Fatigue Starts or worsens at times of hormonal changes: puberty, pregnancy, or menopause 
• Easy bruising 
• Presence of nodular and/or fibrotic texture beneath the skin that can create an uneven, dimpled appearance 
• Edema and joint hypermobility may also be present
  

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.