Lipedema, a poorly understood disease characterized by irregular fat distribution and accumulation, can dramatically impact quality of life, workforce participation, and healthcare costs. It frequently causes physical discomfort, psychological distress, and other health complications. Yet despite Lipedema’s impacts and a high estimated prevalence of the disease, we know little about how frequently it manifests in different populations, how regularly symptoms disrupt daily life, or its precise healthcare costs.
This knowledge gap is largely due to inadequate studies of epidemiology (i.e., patterns in the distribution of a disease). Accurate and innovative prevalence data is necessary to understand the true dimensions and impacts of Lipedema. With more accurate prevalence data, we can identify important research questions, develop better diagnostics and treatments, educate patients and providers—and crucially, we can motivate funders and policymakers to prioritize all of these efforts. In this post, we review the status of current epidemiology research and spotlight how high-quality studies and new research approaches could reveal Lipedema’s true burden to both individuals and healthcare systems.
The Need for Precise Lipedema Prevalence Data
While we know Lipedema occurs almost exclusively in women, Lipedema’s precise prevalence is uncertain. A literature review published in 2020 estimated that 10-11% of women—some 400 million people—have Lipedema [1]. But numbers vary widely across different studies and tend to be based primarily on European populations, which likely skews the overall picture. One British dermatology department documented 67 Lipedema cases in 15 years, resulting in a minimum prevalence estimate of 0.001%— although the authors noted this is likely an underestimate [2]. A Brazil-based online screening tool indicated that 12.3% of respondents would meet criteria for Lipedema [3], whereas one screening in Germany found 4.8-9.7% of participants had moderate to pronounced Lipedema [4].
Prevalence of Lipedema Symptoms
In addition to identifying Lipedema’s prevalence, we also need to better understand the prevalence of specific symptoms in the disease. For example, all published Lipedema diagnosis guidelines mention the presence of pain as a possible symptom. Yet recent estimates of pain and sensitivity prevalence range between 62% and 100% [2,5,6,7,8,9,10,11,12,13,14]. (Because some research studies require pain, the frequency of 100% could be an artifact of the inclusion criteria necessary to be enrolled in the study.) Moreover, people with Lipedema report pain that can range from mild to debilitating and that can range in quality from “dull” to “throbbing” to “tearing”—yet many studies do not describe pain intensity or quality at all.
These challenges extend to a range of other symptoms. In addition to the hallmark excess adiposity in limbs, some people with Lipedema report daily fatigue [15,16] attention and working memory issues (commonly referred to as “brain fog”), easy bruising, swelling, cold skin, spider veins, fat pads around the knees, and hypermobile joints. However, these reports tend to draw on a variety of small studies that may use different approaches to symptom measurement. Without robust data from systematic, large-scale surveys, the true prevalence of these symptoms remains unclear, and it is difficult to identify the most urgently needed treatments.
Beyond Lipedema: A Web of Comorbidities
Although Lipedema may be mistaken for other health conditions, people with Lipedema may also have other conditions. One study found that Lipedema patients are more likely to develop obesity, lymphedema, migraines, and hypothyroidism, but these findings require further confirmation [10]. Similar to prevalence estimates for Lipedema itself, prevalence estimates for these comorbidities vary dramatically. Obesity may affect between 37.6% and 79.6% of Lipedema patients [10, 14, 17, 18], and migraines impact anywhere from 7% to 22.6% of patients [10, 14, 17, 19, 20]. If we knew how often these comorbidities overlap with Lipedema, clinicians could build better care plans and researchers could better quantify the disease’s economic toll.
The Hidden Cost to Healthcare Systems
Lipedema burdens not only individuals, but entire healthcare systems. The precise economic burden of Lipedema is largely hidden due to incomplete prevalence data. How much money do Lipedema patients spend on healthcare? How frequently does Lipedema force people out of the workforce? Establishing a clear picture of these costs will enable us to build accurate value frameworks that can assess the cost-effectiveness of specific therapies.
Understanding Lipedema Prevalence: Obstacles and Opportunities
Despite the urgent need for accurate data on Lipedema prevalence, there are still substantial challenges to collecting this information. High-quality epidemiology studies require significant financial resources and time. We can’t simply identify people who have been diagnosed with Lipedema, because a lack of standardized diagnostic criteria and diagnostic coding makes these data unreliable. Instead, we may need more innovative approaches to prevalence studies.
Novel data collection practices could help. Large public health databases are one potential tool. For example, the UK Biobank, the Germany-based National Cohort study (NAKO), and the U.S.-based National Health and Nutrition Examination Study (NHANES), may have relevant data on large numbers of people. Similarly, we could collect data through collaborations with specific healthcare providers who are more likely to engage with Lipedema patients (such as gynecologists or bariatric surgeons), or by partnering with long-term studies of other conditions (such as obesity) to track risk of Lipedema in those populations.
In fact, this kind of data mining has already proven fruitful. In November 2022, an analysis of data from the UK Biobank identified women with and without the Lipedema phenotype [21]. The researchers subsequently used that information to identify 18 regions within the genome that likely play a role in Lipedema. This analysis demonstrates how, despite challenges, we can leverage innovative approaches and existing resources to further our knowledge of this disease's prevalence and mechanisms.
Collective Efforts to Improve Outcomes
As challenging as it may be, epidemiology studies have the potential to change the foundations of Lipedema research and care. With more precise prevalence estimates, we can demonstrate to funders and policy makers the importance of Lipedema research and public health approaches and broaden support for a wide range of innovative future research.
So what creative ideas do you have to uncover the true prevalence of Lipedema? What strategies have been successful in other fields that have faced similar challenges? We want to hear what you think! Your input may lead us to new and effective ways of understanding the prevalence of Lipedema and help us improve the lives of everyone affected by this disease.
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