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.

By Guy Eakin, PhD

One of the confounding issues of Lipedema is that its features present inconsistently across patients, complicating researchers’ ability to develop standard ways of classifying that feature. Texture is a prominent example. Many women with Lipedema can feel nodules and other texture changes under their skin and may even see changes in the surface appearance of their limbs. This texture can feel different between affected regions of the same patient and may also change over time.

By Kathy Doherty

If you follow the Lipedema Foundation on social media, you’ve probably noticed that we’ve been posting key findings from the LF Registry First Look report during the past two months. This report analyzes participant data from the Registry, which we launched in March 2019 to learn more about patient experiences with Lipedema.

Because there is a lot of data to digest in the First Look report, we published each finding on social media (Facebook, Instagram, LinkedIn, and Twitter) as a stand-alone post. This allowed us to see which findings resonated with our community as well as listen and learn from comments on the posts. It’s one thing to look at the data – it’s another to see how our community reacts to the information.