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Dispelling 8 myths - ILA misinformation campaign
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Thank you for a fantastic ILF 2025 Conference

The International Lymphoedema Framework Conference was held 23-25 October 2025 in Niagara Falls. At the conference, the ILA hosted four highly attended lipoedema sessions for healthcare professionals and two dedicated patient sessions on topics selected by patient representatives.

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ILF 2025 Niagra Falls - ILA group photo

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Dispelling 8 Myths About Lipedema

Living with lipedema can be confusing, frustrating, and at times overwhelming. Too often, women searching for answers are met with misinformation — repeated misconceptions based on outdated science, and contradictory advice, sometimes leading to costly and ineffective treatment.

The International Lipedema Association (ILA) has launched the awareness campaign “Dispelling 8 Myths About Lipedema”, a series of eight videos featuring experts from the ILA Board who address and dispel common myths about lipedema to provide clarity.

 

Explore the campaign
Myth: "There is edema in lipedema"

Myth: There is edema in lipedema

For many years, lipedema has been described as a condition involving fluid build-up or swelling in the legs. This has led to the widespread belief that lipedema is a form of edema (fluid retention).

Truth: Lipedema is not an edema or lymphatic disorder.

Learn more and watch the video

Myth: Lipedema causes easy bruising

Older definitions included easy bruising as a symptom, but recent research tells a different story. Many women with lipedema do not bruise easily, and many people who do bruise easily do not have lipedema.

Truth: If you have easy bruising, it is most likely not caused by lipedema.

Learn more and watch the video

Myth: Lipedema occurs on the abdomen

It is sometimes wrongly claimed that lipedema can spread to include the abdomen. And because many patients with lipedema also struggle with abdominal weight gain, the assumption feels convincing.

Truth: Lipedema occurs exclusively in the extremities—not the trunk, head, or neck.

Learn more and watch the video

Myth: Lipedema is a common disease

Lipedema is often described as a “common” condition, with estimates claiming that up to 10–15% of women are affected, but actually, the true prevalence of lipedema is unknown — and certainly not as high as often claimed.

Truth: The true prevalence of lipedema is unknown.

Learn more and watch the video

Myth: Lipedema is a lymphatic disorder

One of the most persistent misunderstandings about lipedema is the belief that it is a disease of the lymphatic system. But current evidence clearly distinguishes lipedema from true lymphatic disorders.

Truth: Lipedema is not a disorder of the lymphatic system.

Learn more and watch the video

Myth: Lipedema is a progressive disease

Lipedema is not inherently progressive. How it develops depends on many factors, which means you are not destined to become less mobile or more limited over time.


Truth: Lipedema is not inherently progressive — disease progression depends on other factors.

Learn more and watch the video

Myth: Lipedema is responsible for weight gain

The frequent co-occurrence of lipedema and obesity reinforces the myth that lipedema causes weight gain. But reality is that lipedema itself does not cause weight gain.

Truth: Lipedema is not responsible for weight gain.

Learn more and watch the video

Myth: Weight loss has no impact on lipedema

Patients are often told that weight loss has no effect on lipedema. Understandably, this leads to frustration and the belief that lifestyle changes are irrelevant. But this is not the full picture.

Truth: Weight loss cannot cure lipedema, but it can reduce symptoms and improve quality of life.

Learn more and watch the video

From the ILA Co-Presidents

“We stand for providing evidence-based information to support healthcare professionals and women with lipedema in achieving the best possible diagnosis and treatment.

 We are committed to dispelling misinformation, and we encourage open dialogue that reflects diverse perspectives to move science forward.”

– Ad Hendrickx and Gabriele Erbacher, ILA Co-Presidents, September, 2025.

RESOURCE LIBRARY

Want to educate
yourself?

The ILA Resource Library includes a large number of educational materials which can be accessed free of charge by members.

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International Consensus on Lipoedema/Guidelines

What is the definition of lipoedema?

Lipoedema-Syndrome is a chronic condition in women characterized by two main criteria:
  1. Disproportionate increase in adipose tissue in the legs (sometimes in the arms)
    Plus
  2. Pain and/or tender to touch the adipose tissue
 

This means: Adipose legs without any complaints cannot be diagnosed as lipoedema.

In addition to these major symptoms the vast majority of patients with lipoedema also suffer from: 
  • Overweight and obesity (which is a chronic disease independent from lipoedema)
  • Reduced physical fitness
  • Mental issues like e.g. chronic stress syndrome, depression, or eating disorders
  • Lack of self-acceptance because of current beauty ideal
 

Comprehensive treatment of lipoedema should therefore take into account all those aspects which are not as immediately obvious as the observable changes and reported symptoms. Appropriate to this clinical complexity, an interdisciplinary and holistic therapeutic approach has to be provided. This should include physio- and movement therapy, compression therapy, psychosocial therapy, weight management, liposuction in selected cases, and self-management.

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As an ILA member, you will be part of an international network and receive the latest news within the field of Lipoedema.

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Strategy and vision

Our vision is to improve the quality of life among people affected by lipoedema globally, by providing holistic, evidence-based treatment according to their individual needs.

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