By Guy Eakin, PhD

In the below blog post, our Chief Science Officer, Guy Eakin, addresses a point of ongoing controversy in the Lipedema medical and research fields: Does Lipedema, as its name implies, actually involve edema, which is defined medically as swelling caused by fluid trapped in tissues of the body?

About 60% of Lipedema patients in the LF registry tell us their thighs and calves swell. Indeed, LF’s founder and staff with Lipedema watch their legs change shape every day. Patients report that they feel their legs getting heavier or fuller as the day goes on, or that new subcutaneous fat appears on their legs, or that the skin on their legs feels “looser”.

At the level of the systems in the body, what is actually causing this swelling that Lipedema patients broadly report? This is an important question for several reasons.

By Guy Eakin, PhD

One of the confounding issues of Lipedema is that its features present inconsistently across patients, complicating researchers’ ability to develop standard ways of classifying that feature. Texture is a prominent example. Many women with Lipedema can feel nodules and other texture changes under their skin and may even see changes in the surface appearance of their limbs. This texture can feel different between affected regions of the same patient and may also change over time.

By Kathy Doherty

If you follow the Lipedema Foundation on social media, you’ve probably noticed that we’ve been posting key findings from the LF Registry First Look report during the past two months. This report analyzes participant data from the Registry, which we launched in March 2019 to learn more about patient experiences with Lipedema.

Because there is a lot of data to digest in the First Look report, we published each finding on social media (Facebook, Instagram, LinkedIn, and Twitter) as a stand-alone post. This allowed us to see which findings resonated with our community as well as listen and learn from comments on the posts. It’s one thing to look at the data – it’s another to see how our community reacts to the information.

By Stephanie Peterson

Today, a Lipedema diagnosis requires a “clinical diagnosis.” This means that a diagnosis is primarily the professional opinion of a skilled physician based on the clinical exam and patient history. To date, there remains no laboratory or imaging finding that positively confirms the presence of Lipedema.

Over the years, several papers have been written to codify what goes into the diagnosis of Lipedema. Most physicians with experience in Lipedema can trace their clinical approach back to one or more of these resources.

In some cases these documents are well established scholarly papers, such as one of the original papers by Allen and Hines that are frequently cited by other scholars. In more modern times, expert groups have often worked together to systematically summarize available research evidence, and propose adaptations of the diagnostic criteria and treatments. These reports may be adopted by professional societies, or published independently.

By Evangelia Bellas, PhD

As biomedical engineers, we are trained to employ our skill set to work towards solutions to help people. But often, we focus on the details of the problem, on the cells or the tissue, knowing that if successful, we could eventually help patients. When we share our research at conferences or through research articles, we interact with other researchers, and know their faces and names. But because we are biological engineers – and not clinicians – we don’t often meet the patients face-to-face that we are creating solutions for.

In my laboratory, the BellasFATLab, we focus on engineering adipose tissue. Adipose tissue is more commonly known as body fat. When people hear about our work, they tend to think of how they would like to get rid of their adipose tissue to lose weight easily and without much effort. Something that many of us would love a magic pill for! But until we get there, BellasFAT Lab engineers adipose tissue to develop 3-dimensional tissue models of obesity and metabolic (dys)function. This allows us to study fat cells and their surroundings (microenvironment) to learn how these change when going from a healthy to a diseased state. Then we look to uncover new therapeutic targets to hopefully get closer to that magic pill.