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.

A resource for advocating for a diagnosis and effective treatment.

Shortly after puberty, Jaime began to put on weight, especially in her legs and arms. Like many teens struggling with weight issues, Jaime thought she needed to cut calories and exercise more, and went on the first of many diets. In high school, she danced as part of a team and, later in college, she taught dance. While dancing, she experienced bouts of pain in her legs. Several times the pain was so severe that she visited the emergency room, fearing she had a blood clot.

Molly Sleigh, OTD, OTR/L, CLT-LANA, is an expert in cancer rehabilitation, survivorship care, lymphedema, and Lipedema management. She has led national guideline initiatives for establishing the standard of care for Lipedema through the U.S. Lipedema Consensus Panel and Lymphedema Coalition. Sleigh serves as adjunct professor at Rocky Mountain University, serves on the Medical Advisory Board for Fat Disorders Resource Society (FDRS), is a faculty member of the American Vein and Lymphatic Society (AVLS), and served as a member of the Lighthouse Lymphedema Network Board of Directors. She is based in Colorado Springs, CO.