By Kathy Doherty

If you’re a member of the Lipedema Foundation community, you’re probably aware of the LF Registry, which we launched a couple of years ago. You might have already enrolled in it - and if so, we are very grateful for your participation!

But you may be wondering: What is a patient registry? Why should I get involved? And what do they do with the data they collect?

By Guy Eakin, PhD

For many years, an end-of-the-year review of Lipedema literature was a relatively simple exercise. Between 1950 and 2014, there was only one year when the field produced more than 10 papers in a single year. Fast forward to today where we celebrate 50 new publications since January 1, 2021. Remarkably, another metric is shifting as well. There was an almost 10% growth in the ratio of papers presenting new data to articles that summarize prior work (often for medical education, or to present new hypotheses).

Taken together, these numbers mean that half of the studies ever published in Lipedema research have emerged in only the last 3.5 years!

The focus of the Lipedema Foundation is, of course, on that data. We have funded about 20% of the work published in recent years and remain the world’s largest funder of Lipedema research. Our own scientific strategy is to create an environment conducive to effective clinical research. To do that, our attention is on three things – people, ideas to test, and measurements to make – each of which showed advancement this year as described below.

by Jaime Soderberg

I can vividly recall my nine-year-old self walking the aisles of a local department store with my mother in a quest for a new summer wardrobe. Out of the corner of my eye, I spotted it: the perfect striped summer dress. Sprinting to the dressing room, mom helped me get the dress over my head. Hurriedly, I poked my arms through the holes when suddenly devastation struck. I was stuck, really stuck! Mom pulled, tugged, twisted, and turned as she tried to force those capped sleeves over my chubby upper arms. With a final double fisted yank, off flew the dress. Just like that, my summer dreams lay balled up on a dressing room floor.

by Guy S Eakin, PhD

It’s one thing to be acknowledged, and another to be recognized.

The American College of Cardiology (ACC) recently published its view of the competencies that are expected of practicing vascular medicine specialists [1]. Not only does it acknowledge Lipedema, but it also recognizes Lipedema a distinct entity from the lymphatic disorders with which it is normally grouped. The bold face section title says it all: “[Section] 4.2.7 Lymphatic Diseases and Lipedema.”

The report itself is the joint effort of an 18-person committee including official representatives of the ACC, AHA, ACP, ABC, SCAI, SVM, and the SVS.* The committee was supported by an additional 25 multi-disciplinary peer reviewers, an impressive number that just barely exceeds the rather impressive number of letters in the organizational abbreviations.

The recommendations detailed in the report are intended to guide training for cardiologists who complete a 3-year fellowship and elect to specialize in vascular medicine. In the United States, this is achieved through an additional year-long “advanced vascular medicine fellowship” followed by an examination by the American Board of Vascular Medicine.