Sarah Bramblette Honored with OAC Member of the Year Award

Lipedema: An Overdue Call to Action

“It’s about time.” That was the instant reaction of Sarah Bramblette upon reading a new review of lipedema science in Obesity. Bramblette is a tireless advocate for people living with lipedema and lymphedema. The title of the review – A Call To Action! – pretty well describes everything she does. But inaction is more typical of the response for almost 80 years since doctors first reported lipedema in 1940. Thus, we lack even a basic understanding of the pathophysiology for this disease.

It signals a remarkable lack of curiosity.

More Than 16 Million Women

Like almost everything else with this disease, solid numbers for prevalence are scarce. But the best available estimates suggest that it affects more than 16 million women in the U.S. Roughly one in nine women. Most don’t know it. All too often, this genetic condition gets mislabeled as obesity. Blame the patient and move on.

Unknown and Underdiagnosed

In their review, Giacomo Buso and his colleagues sum up the knowledge gaps:

Despite the clinical impact on women’s health, lipedema is in fact mostly unknown, underdiagnosed, and too often misdiagnosed with other similarly presenting diseases.

You might call this a curiosity deficit disorder. It’s clear enough that this disease has a genetic basis. But scientists don’t know the mechanisms that cause it. So doctors don’t know precisely how to treat it. Compression garments can be quite helpful for symptomatic relief. However, insurance coverage is a problem.

Dietary interventions don’t really have an effect on lipedema itself. In fact, lifestyle changes overall don’t have much, if any, effect on lipedema. If lifestyle has any benefit, it’s all about symptomatic relief and coping.

Curiosity Needed

Advocacy for better care is hard, says Bramblette, because we know so little about the disease. She describes a fundamental need:

We need research into the cause of lipedema so we can find effective treatments. Lipedema tissue doesn’t respond the same to calorie restriction and exercise as normal fat does.

How long will we keep turning our heads and pretend that we just don’t see the suffering that this disease causes? Because it’s so easy to confuse lipedema with obesity, implicit bias kicks in. Some people don’t like to think about really hard problems.

But with a bit more objectivity and plenty of curiosity, hard problems can turn into invigorating challenges. And it’s about time that physicians and researchers take on this challenge to improve the lives of millions of women.

Click here for the review by Buso. Here and here you can find further information on Lipedema from the Obesity Action Coalition.

Sarah Bramblette Honored with OAC Member of the Year Award, photograph © Obesity Action Coalition / Facebook

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September 27, 2019