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.

2 | A New Horizon for Diagnostics

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.

1 | The Field is GROWING!

by Guy S Eakin, PhD

Our countdown of 2020 Lipedema research does not begin with a study. It’s more of a comment on studies, and one that requires a quick history lesson. This year marks the 80th anniversary of the original publication by Allen and Hines [1]. It’s a paper that reported a diagnostic criteria that has proven simple and lasting, with only modest updates three generations later.

That paper was perhaps too lasting, the next four decades averaged only a single publication per year, as recorded by the US National Library of Medicine.

In that time period, the world and medical practice certainly changed, but Lipedema continued. The black and white images of women’s bodies in that first paper remind us that while Lipedema patients have more therapeutic options today, they also still face many of the same issues that burdened the women in Allen and Hines’ studies.

Fast forward to 2010, when the Lipedema research community published a record twelve publications in a single year.

Intro | 2020 Year in Review

by Guy S Eakin, PhD

2020 will surely inspire many attempts to capture the year in review. In a year that required so much of our attention, it could certainly be forgiven if you missed some of the encouraging advances in the world of Lipedema research.

It was no easy feat for a research community distracted by the same things that distracted us all. 2020 required us all to become experts in many areas. We learned epidemiology from a global pandemic. We even learned a thing or two about murder hornets and making our own masks.

But if you were watching Lipedema research this year, there was much to learn, and many reasons to get excited for where research is taking us.

Over the US Thanksgiving holiday, the Lipedema Foundation staff put our heads together and counted down the top ten research observations we feel signal hope for the women living with this poorly known, and vastly understudied, condition.

The Lipedema Foundation Registry Has Launched!

by Erik Lontok

At the outset of our Lipedema project, a patient registry had long been considered a Foundation priority. As we launched our first grant cycle in 2017; laid the groundwork for the now robust LF research network; and built and maintained relationships across the Lipedema clinical, patient advocacy, and research diaspora - we always kept in mind how best to design, implement, and execute the community’s shared desires for a Lipedema patient registry.

After an arduous 2018, and a hectic 2019, it is our pleasure to announce that Lipedema Foundation Registry (LFR) has launched! We could not have accomplished this without the the help of intrepid explorers like Joanna Dudek (SWPS U.), Tilly Smidt, Sharie Fetzer (Lipoedema UK), Karen Herbst (U.Arizona), as well as Rachelle Crescenzi and Paula Donahue (Vanderbilt U.), alongside the technical and survey expertise of REDCap Cloud and RTI International, and of course the countless testing hours volunteered by family, friends, and patients.

So the picture below is for all of those whom have helped make this possible - a gracious thank you and cheers to all of you!

LF South (Maryland Office) members celebrating the LFR launch. From left to right, Stephanie Peterson/Registry Guru, Erik Lontok/Bystander Scientist, Leanna Frye/Comms Aficionado.

LF South (Maryland Office) members celebrating the LFR launch. From left to right, Stephanie Peterson/Registry Guru, Erik Lontok/Bystander Scientist, Leanna Frye/Comms Aficionado.