A Look into the Past Year of Lipedema Research
Recent research has been amping up for Lipedema diagnosis and treatment
Having a Lipedema diagnosis is beyond frustrating because the medical community (and the insurance industry) have not yet recognized this as a real disease and historically haven’t done the research we desperately need.
In fact, between 1950 and 2014, there were typically less than ten research articles (and sometimes none) per year. But within the past 3-4 years, Lipedema research has exploded! More Lipedema research has been accomplished within the past four years than it had between the years 1950 and 2000.
Here’s a look into some things going on in Lipedema research and treatment:
Lipedema Standard of Care: In 2021, the Standard of Care for Lipedema in the United States was published. This was a huge step for Lipedema treatment and has been the standard used right now for treatment. Read here.
A team at Vanderbilt University Medical Center is studying the use of diagnostic imaging to improve the diagnosis and treatment of Lipedema. They developed an MRI strategy to quantify sodium content and fatty subcutaneous adipose tissue (SAT) throughout the body. They are looking at sodium as a marker of inflammation and that this reduces after MLD massage. Learn more here.
Lipedema.org has a Foundation Registry for Lipedema women. This registry has an initial survey that includes basic health information and specific questions related to ongoing studies. It takes about 60 minutes and you don’t have to answer all the questions if you don’t want to. Go here.
There are some studies with regard to immune function and Lipedema, especially pain and metabolism. One study is looking at macrophages. Macrophages have been shown to possibly play a role in immune function, metabolism, and adipose proliferation, and if macrophages have a responsibility in causing Lipedema. Read here.
This is just a small sample of research happening for Lipedema. When I started on my Lipedema journey in 2021, there was little to no information out there. I really had to dig!
Now, there is so much information on Lipedema I learn new stuff all the time. I think this uptick in information is putting Lipedema diagnosis and treatment at the forefront. With time, I hope that Medicare will see this disease and start providing Medicare coverage language for Lipedema treatment, surgical and non-surgical.
The First International Lipedema Symposium was held earlier this month at the Lipedema World Congress in Berlin, Germany. This forum brought practitioners and patient representatives from around the world to talk on multiple topics of Lipedema.
The goal is to have several advocates and physicians come together to discuss the most advanced ways that they are working to treat Lipedema. If you want to learn more about that, go here.
Every year, the Fat Disorders Resource Society (FDRS) holds an annual conference on Lipedema. This meeting is open to all who are interested in Lipedema, Dercum's disease, and Madelung's disease. This year, it will be held in St. Louis, to the Marriot St. Louis Airport Hotel April 19-21, 2024. I am hoping to go this year, and looking into flights and accomodations. It looks like I’ll have to save up, but I think it’ll be worth it. Let me know if you plan to attend!
This is a great video about the struggles women have when trying to find out a diagnosis and then arrive at Lipedema. If you’re unsure if you have Lipedema or would like some validation that Lipedema is an elusive disease that women spend years trying to get diagnosed and treated. Even if you watch only the first few minutes, it’ll give you so much information you might not want to stop watching!
Thank you for reading Lipedema and Me. Without you, I wouldn’t be doing this!
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Take Care,
Michelle