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?”

Pain affects many people with Lipedema and can range from mild to debilitating. Yet many questions about the origin, prevalence, and treatment of Lipedema pain remain unanswered. 

Research into Lipedema pain is pulling back the curtain on these questions, but until we have better tools to understand its complexities, patients need to be able to have honest and meaningful discussions about this topic with their healthcare providers.

In this post, we’ll dive into some of the pressing and controversial issues surrounding pain in Lipedema diagnosis and treatment. We’ll also review why it’s crucial to pay close attention to how patients describe pain to make the best care decisions.

In this year’s research roundup, we’re looking ahead as much as we’re looking back. After celebrating 50 research publications in 2021, we’ve still only begun to tease apart some of the most complex questions facing researchers, clinicians, and patients. 

We’re proud that Lipedema research continues to accelerate. In fact, more than half of Lipedema studies ever completed have been published in the last 4.5 years. The rigor and quality of studies continue to improve, delivering more meaningful findings that offer paths to future treatments. With growth, however, comes a responsibility to set new benchmarks for future work. As we ask more of the research in 2023, sponsors and journals may refine their priorities and help shape an exciting roadmap for high quality discoveries.

Bringing together the best and brightest minds working in Lipedema research.

The Lipedema Foundation led its pioneering 2022 Scientific Retreat in Reston, VA, this past December, as researchers and clinicians convened from around the globe for two days of learning, conversation, and collaboration.

More than 60 attendees engaged in presentations and panel discussions and received updates on LF-funded projects. They also contributed to small-group breakout sessions and networking events, including a poster session.