by Guy Eakin, PhD

Although we have much to learn about how a person’s genetic code can influence the probability that they will develop Lipedema, researchers generally believe that genes do play a role. It is not uncommon for women with Lipedema to be able to point to other members of their family who either had a Lipedema diagnosis or could be described as having similar body shapes. In fact, the earliest descriptions of Lipedema all point to the likelihood that the condition can be passed between generations [1–3].

In 1951, one seminal Lipedema study reported that 16% of women with Lipedema reported a “history of similar ‘large legs’ in female members of the family” [3]. In more recent studies, reports of a family history of Lipedema tend to be much higher, and consistently range from 64% to 89% [4–11], with some lower estimates ranging from 30% to 40% [12–16].

Two studies of women with Lipedema went further, characterizing family relationships that suggest women with Lipedema are most likely to have an affected mother (29-38%) followed by grandmother (17-35%), aunt (8-23%) and sister (5-14%) [11,17].

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.