Increasing Awareness for Lipedema

Lipedema is still under-recognized and listed as a rare disease according to the Genetic and Rare Diseases Information Center (GARD)1. Even some healthcare professionals are not aware of lipedema or mistake it for obesity or lymphedema. But there is some good news: more and more scientific articles are published about lipedema. So how does this affect you and your lipedema?

Increasing Awareness for Lipedema

The Past and Present

PubMed is the largest database for scientific articles, where you can find almost all internationally published research. When you search for the term "lipedema" on this database, you'll get 54 results compared to 2.200 for lymphedema (search date: August 2021). However, the number of published articles about lipedema constantly increased within the last few years. Why is this so important?

Diagnosing lipedema can be a challenge: there are no specific bloodtests or tools, and healthcare professionals must rule out other diseases that can cause similar symptoms. Commonly, people with lipedema visit many different healthcare professionals before getting their diagnosis and starting with their treatment. Maybe you have been in a similar situation as well that felt like an emotional roller coaster ride? 

The more healthcare professionals know about lipedema, including its causes and symptoms, the sooner it will be recognized and treated. Therefore, it is so essential that lipedema gets in the focus of current research.

How to Improve Lipedema Treatment

A group of authors published an article called "Lipedema: A call to Action" in 2019.2 In this review, the authors highlight the need for more awareness about lipedema as a chronic disease and state:
"Despite the clinical impact on women's health, lipedema is in fact mostly unknown, underdiagnosed, and too often misdiagnosed with other similarly presenting diseases." 2

Even more important, a group of healthcare professionals from different disciplines and European countries agreed on a consensus document about lipedema.3 This means that they sat together and developed a best practise document based on scientific evidence and their extensive experience including all relevant treatment elements for lipedema. The authors also cleared up several misunderstandings or "myths" about lipedema, which is helpful for healthcare professionals.

What You Can Do to Increase Awareness

Talking about your lipedema also helps to increase awareness. If you are talking to other women about your lipedema, encourage them to find out more and explore it for themselves using any of the resources listed below. You can also have a look at our article about how to explain your lipedema to your colleagues and other people here.

 

1 https://rarediseases.info.nih.gov/

2 Buso G, Depairon M, Tomson D, Raffoul W, Vettor R, Mazzolai L. Lipedema: A Call to Action!  Obesity (Silver Spring). 2019 Oct;27(10):1567-1576. doi:10.1002/oby.22597.

3 Bertsch T, Erbacher G, Elwell R. Lipoedema: a paradigm shift and consensus. J Wound Care.  2020 Nov 1;29(Sup11b):1-51. doi: 10.12968/jowc.2020.29.Sup11b.1.

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