Lipedema Explained: Causes, Symptoms, and Treatments

Lipedema: A Growing Global Health Concern Affecting Millions

Lipedema, a chronic and often misunderstood medical condition, affects approximately 10% of women worldwide. Characterized by an abnormal accumulation of fat in the legs and arms, this disorder has long been mistaken for obesity or excess weight. Despite being first described in 1940, lipedema remains largely unknown and underdiagnosed, leading to challenges in treatment and management.

Understanding Lipedema

Lipedema differs significantly from general obesity due to its distinct fat composition. The affected areas often exhibit a dimpled or nodular appearance, similar to "orange peel" skin or rice grains. Unlike typical fat deposits, lipedema fat is resistant to weight loss through diet and exercise.

Dr. Fábio Kamamoto, a plastic surgeon and founder of the Lipedema Institute in São Paulo, explains: "We see women with slim waists who eat healthily and exercise regularly, yet they continue to struggle with disproportionate fat accumulation in their legs and arms." This highlights the condition’s unique challenges, as traditional weight management methods prove ineffective.

Recognition as a Medical Condition

In 2019, the World Health Organization (WHO) officially classified lipedema as a rare disease. This recognition was further reinforced in 2022 when it was included in the International Classification of Diseases (ICD-11), a global reference for diagnosing and recording health conditions. The inclusion of lipedema in ICD-11 is a significant milestone, facilitating better diagnosis, medical recognition, and policy development to support affected individuals.

However, in Brazil, the adoption of ICD-11, initially set for 2025, has been postponed to 2027. The delay is attributed to the need for professional training and upgrades to healthcare systems to ensure proper diagnosis and treatment.

Symptoms and Diagnosis

Lipedema progresses through five stages, with symptoms becoming more pronounced over time. Common early indicators include:

• Symmetrical swelling in both legs

• Fat accumulation below the knees, with a slimmer upper body

• Soft skin texture with a tendency to bruise easily

• Persistent heaviness, pain, and fatigue in the legs

As the condition advances, it impacts physical appearance, mobility, and overall health. If left untreated, lipedema can lead to joint pain, difficulty walking, and emotional distress. Since symptoms can resemble other medical issues, a professional diagnosis is essential.

Dr. Mauro de Andrade, a vascular surgeon, notes that family history and hormonal changes (such as puberty, pregnancy, and menopause) are significant factors. While imaging tests are not always required, they can help assess the extent of the condition and guide treatment decisions.

Scientific Understanding and Ongoing Research

Lipedema remains a subject of ongoing research, as its exact cause is still unclear. Scientists believe it has a genetic basis, often running in families, and is linked to hormonal imbalances, particularly estrogen levels. These factors explain why the condition often worsens during hormonal shifts.

Dr. Kamamoto emphasizes the need for further studies: "Understanding the cellular mechanisms behind lipedema will allow us to develop more effective treatments, including targeted medications."

Treatment Options

There is currently no permanent cure for lipedema. Management primarily focuses on symptom relief through:

• Nutritional therapy: Avoiding processed foods and adopting an anti-inflammatory diet.

• Manual lymphatic drainage: A massage technique to reduce swelling and discomfort.

• Compression therapy: Wearing specialized stockings to support circulation and minimize fluid retention.

In severe cases, liposuction surgery may be recommended to remove diseased fat cells. While this procedure does not eliminate lipedema entirely, it can provide long-term relief by reducing pain and improving mobility. However, costs are a major barrier, with surgeries in São Paulo averaging around 40,000 Brazilian reals ($4,300,000 CFA francs), excluding pre-operative evaluations and post-surgical care.

Raising Awareness and Overcoming Stigma

Despite affecting millions globally, lipedema remains poorly understood, even within the medical community. Social media and advocacy by public figures, such as Brazilian model Yasmin Brunet, have played a crucial role in raising awareness.

However, some health professionals still debate whether lipedema qualifies as a disease. Dr. Kamamoto explains: "Some doctors dismiss lipedema, believing it is merely an excuse for obesity. This stigma prevents many women from seeking help."

Given the physical and psychological toll of lipedema, greater efforts are needed to enhance medical education, promote early diagnosis, and ensure treatment accessibility. Increased awareness and research investment are key to improving the lives of those affected by this condition.