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.

By Guy Eakin, PhD

In the below blog post, our Chief Science Officer, Guy Eakin, addresses a point of ongoing controversy in the Lipedema medical and research fields: Does Lipedema, as its name implies, actually involve edema, which is defined medically as swelling caused by fluid trapped in tissues of the body?

About 60% of Lipedema patients in the LF registry tell us their thighs and calves swell. Indeed, LF’s founder and staff with Lipedema watch their legs change shape every day. Patients report that they feel their legs getting heavier or fuller as the day goes on, or that new subcutaneous fat appears on their legs, or that the skin on their legs feels “looser”.

At the level of the systems in the body, what is actually causing this swelling that Lipedema patients broadly report? This is an important question for several reasons.