Wrapping Up an Exciting Year for Lipedema Research

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.

Seasons Change

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.

Recognizing Lipedema

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.

4 | Bringing Power to Lipedema Research

by Guy S Eakin

While research into the causes of Lipedema progresses, we know patients and health care workers are still looking for what can be done today to improve the lives of people with Lipedema. This is often a trial and error process. Unfortunately, the trials and errors are not just in trying the right treatment, but even in finding which treatment to try. The level of poor information out there for women with Lipedema is tremendous, and often a therapeutic approach to Lipedema includes sifting through mountains of testimonials and anecdotes to find reliable data. As we bring 2020 to a close, we are taking a look at the Lipedema research that particularly excited us this year because of what it’s doing to help control that problem.

We would like to start our last blog for the year by pausing to celebrate a new study that carefully evaluates treatments Lipedema patients are already receiving. When we review research, we often look for specific things. In this article, we were looking for words and phrases like “statistical power,” “blinding,” and “effect size.” These loosely translate to: “Was the study large enough?”, “Did the investigators reduce opportunities for bias?”, and “Was the effect of the treatment large enough that a patient might notice the difference?”

3 | Patients Being Heard

by Guy S Eakin, PhD

As we take stock of the progress achieved in 2020, we need to ask what we are learning from the patients themselves. Lipedema once felt rare, but now, it’s feeling more like a movement. At the tender age of 1, the Registry celebrated New Year’s Day of 2020 with its 1,000th enrollee! These women and controls represent a broad cross section of lives that span the breadth of the United States, and the Registry is now even finding interest overseas. Registry data analysis is just beginning, but our hats are off to the people who have stood up to measure their experiences in a coordinated way.

At the Lipedema Foundation, we are celebrating the proliferation of opportunities for patients to share their stories. We are excited by the momentum of the Lipedema Foundation Registry, as well as the growth of patient-led internet groups and organizations.

What we need now is a more consistent data collection process. This will allow us to know if something reported by one patient can be compared to a similar story of another. It’s not a trivial issue, and one of our worries in Lipedema research is that we don’t always know if the way we ask a question will get a similar response from similar patients.