Myth: Lipedema is a common disease
The Myth Explained
Across social media, patient forums, and even in some scientific papers, lipedema is often described as a “common” condition, with estimates claiming that up to 10–15% of women are affected. These figures are repeated widely, creating the impression that lipedema is one of the most frequent chronic diseases in women.
But where do these numbers come from?
Most trace back to unreferenced claims, or to single studies that lacked standardised diagnostic criteria. Once published, the numbers were repeated uncritically until they became “common knowledge” — even without robust data.
The reality is that no reliable epidemiological studies have ever established the prevalence of lipedema. This means we don’t have scientific data on how many women are truly affected.
The Facts
1. There are no robust prevalence data
The S2k Guideline on lipedema (2024) makes it clear:
“The prevalence of lipedema is unknown due to the lack of universally accepted diagnostic criteria and epidemiological studies.” (S2k Guideline, 2024, Section 2.6, paraphrased)
Without standard diagnostic tools — such as imaging, biomarkers, or universally accepted clinical criteria — estimates remain speculative.
2. Claims of “10–15% of women” are not evidence-based
Bertsch & Erbacher (2018) are explicit about this problem:
“All the figures circulating on prevalence, including those in scientific publications, are completely devoid of any evidence.”
(Phlebologie 2018: Lipedema – Myths and Facts, Part 1)
These inflated claims have contributed to confusion among patients and professionals, leading to misdiagnosis and unrealistic assumptions about the scale of the condition.
3. Misdiagnosis further distorts the picture
Because lipedema shares visual overlap with obesity, lipohypertrophy, and lymphoedema, misdiagnosis is common. In some clinical series, “lipedema” is one of the most frequent mislabels for women with non-specific leg enlargement.
This overdiagnosis inflates prevalence numbers and undermines trust in the diagnosis itself.
4. The reality: lipedema is not rare, but not well quantified
While the exact prevalence is unknown, lipedema is not thought to be exceedingly rare. It is encountered in specialist centres, and more women are being identified as awareness grows. But to call it “common” is misleading — and contributes to misinformation.
Future large-scale studies with standardised diagnostic frameworks are needed before we can accurately say how common lipedema truly is.
Q&A for Patients
- I’ve heard lipoedema affects one in ten women — is that true?
No. Those numbers are not based on strong research. The true frequency of lipoedema is still unknown. - Does this mean lipoedema is rare?
Not necessarily — but it’s not as widespread as sometimes claimed. The problem is that we simply don’t yet have reliable data. - Why does this matter to me as a patient?
Because accurate data drive better recognition, research funding, and healthcare planning. Knowing the real prevalence is essential to improving care and support.
If you’ve been told lipoedema is “extremely common,” it is understandable to feel confused when your doctors seem uncertain about the diagnosis. The truth is: medicine is still learning.
You deserve:
- A diagnosis based on current criteria, not speculation
- Clear communication about what we know — and what we don’t yet know
- The assurance that ongoing research is working to provide answers
Until then, remember: you are not a statistic. Your experience matters, regardless of prevalence numbers.
Futher Reading for Healthcare Professionals
From the ILA Co-Presidents
“As ILA, 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.