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?”

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.

by Guy S Eakin, PhD

In spite of a global pandemic, Lipedema research amassed a record number of publications in 2020. Unfortunately, we have other research challenges - notably the lack of clear laboratory or imaging diagnostic strategies. Lipedema patients rely on experienced physicians to make clinical diagnoses based on their knowledge and observations. For each study, we often question how Lipedema was diagnosed, at what stage, and by whom, meaning that every study in our field must be taken with a grain of salt.

This year, five papers challenged this issue and hinted at potential diagnostic “biomarkers” - measurable signals that indicate an underlying biological issue (think of the way your cholesterol level predicts your cardiac risk). For Lipedema, discovery and confirmation of biomarkers would pave the way for standardized tests and could become a cornerstone for testing future therapeutics.

Full disclosure: we try not to be biased, but the first three of the five biomarker papers were supported by the Lipedema Foundation. This is our focus and passion, so hold tight while we boast about our colleagues a little.

Dr. Rachelle Crescenzi led a team of Vanderbilt University Medical Center researchers exploring new ways of distinguishing Lipedema from other conditions like obesity and lymphedema. These conditions often exist alongside Lipedema, but we don’t fully understand the degree to which they may be independent or related to one another.