The Lipedema Foundation (LF) has taken a big step toward solving a problem at the heart of patients’ struggles: a lack of scientific understanding of Lipedema as a distinct disease. The key place where scientific understanding begins is in research laboratories, which need access to a reliable source of biosamples (also called biological samples) for study. But biosamples have been insufficient for the field of Lipedema research—until now.

In the summer of 2023, LF formed a partnership with Vanderbilt University Medical Center (VUMC) and awarded it a $709,500 grant to help establish the first-ever Lipedema biorepository, or “library” of biosamples. This is a collaborative grant, awarded to investigators in the SALT (Sodium Adipose & Lymphatics Translational) Imaging Lab in the Department of Radiology and the Vascular Medicine Section in the Division of Cardiovascular Medicine. This biorepository will dramatically expand research capabilities.

The “invisible” symptoms of Lipedema pose challenges to research and treatment. Patients experience a variety of symptoms that are not easily measured clinically, such as pain, fatigue, and muscle pain. The inability to capture these experienced symptoms precisely and consistently can make it difficult for researchers and clinicians to track and gather data, which can contribute to the challenge of both understanding and diagnosing the disease, and comparing data across studies.

One tool that can be used to better catalog and understand Lipedema symptoms is Patient Reported Outcome Measures (PROMs). PROMs are a type of survey that collects independent patient reports on health, symptoms, quality of life, or other status related to a condition or treatment.

Despite estimates that Lipedema may affect approximately 1 in 10 adult women [1,2,3], Lipedema is understudied, and its root causes remain unknown. Several lines of evidence, however, suggest that sex hormones may help trigger the condition and influence its progression. For example, Lipedema primarily occurs in women, and many women report that their symptoms began during a period of hormonal changes, such as puberty or pregnancy [4,5,6,7,8,9,10,11,12],  Studying these links between sex hormones and Lipedema offers an exciting opportunity to deepen our understanding of the disease in ways that could facilitate diagnosis, help us characterize exactly how Lipedema affects adipose (fat) tissue, and ultimately design better treatments.

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.

In blog posts and other documents, the Lipedema Foundation sometimes presents data on growth in a number of publications in Lipedema research. For example, a statistic we often like to cite is that 50% of primary data papers on Lipedema have been published in the past 5 years. This information can be helpful to put in context the current state of the field as well as its rapid growth. There are several tools, like this, that quickly estimate the growth of Lipedema knowledge. 

But we recently found ourselves asking a more complicated question, “How large is the Lipedema research workforce?”