What is the nature of the beast?

By Tatjana van der Krabben

“Hello beasty.” One of my favorite lines from Pirates of the Caribbean, from Jack Sparrow when finally looking his worst fear eye in the shape of a giant octopus. Very symbolic, facing your demons. How do I envy him for knowing the nature of the beast. I want to slay my dragon called lipedema. For that you need to know what you’re dealing with. So what is the nature of lipedema?

Focus on fat
In 2008 I got formally diagnosed with lipedema by a dermatologist in the Netherlands. I was told to try to lose weight. She could not provide me with dietary advice. My previous low calorie attempts had failed. I googled in Dutch: all the sources said “no known diet” or “diets don’t work”. I started to google in English and eventually found the Rare Adipose Disease (RAD) diet. The purpose was described as to limit inflammation, reduce pain and try to avoid weight gain. RAD diet is currently endorsed on Cure Lipedema blog with arguments such as: “…you’re loading up on foods that are naturally good for you and have the added benefit of reducing inflammation”. And: …”these foods also supply us with essential vitamins and minerals that help boost our immune system.” (http://curelipedema.tumblr.com/tagged/recipes)

Okay, hold on one sec: inflammation? I was always reading and being told I have a fat/lymphatic problem. What does inflammation have to do with things?

Inflammation
What does inflammation look like? The classical signs of inflammation are pain, heat, redness, swelling and loss of function. At the time I was not impressed. I figured pain simply comes with lipedema. The swelling comes from the lymphatic system and that is not doing its job properly because of the lipedema. So I left it. Partially out of disappointment; after finally finding a recommended diet (by dr. K. Herbst & FDRS), it was so rigid I could never see myself following it.

By 2010 media and the internet were exploding with studies linking inflammation to countless conditions. I can quote a lot of big words now from fancy research papers, but Marcelle Pick (OB/GYN OP) explains it in plain English. “It’s fascinating to watch the medical establishment discover inflammation. In the past few years there have been studies suggesting that chronic inflammation lies at the root of heart disease, cancer, osteoporosis, Alzheimer’s, autoimmune diseases like rheumatoid arthritis and psoriasis, and many other immune disorders.” (http://www.womentowomen.com/inflammation/default.aspx)

So there was the inflammation thing again. If it was responsible for so much and varied mayhem, why not lipedema? Or at least a contributing factor to lipedema? What’s causing the inflammation? The National Lymphedema Network summarizes it as follows: “Recent research suggests that diets that reduce inflammation might help with lipedema. The thought behind this is that fat produces inflammation in the body; therefore, a way of eating that helps reduce inflammation might help with lipedema.” (http://www.lymphnet.org/lymphedemaFAQs/questions/question_01_07.htm)

Sorry to jump from source to source, but we’re living off scraps here in Lipedema Land. Some more coordinated research would be useful, if you know what I mean. At the Nederlandse Lipoedeemdag (Dutch Lipedema Day) on October 6^th, 2012 a dr. T.D. Wentel stated lipedema is inflammatory. He also linked the fibrosis we often experience in advanced stages to inflammation. Dr. Wentel works with a highly respected expert on lipedema: professor Neumann. Sorry, paper is not out yet. Same conference, completely different angle (Psycho Neuro Immunology and Integrative manual therapy) same conclusion: lipedema is inflammatory.

In the Dr. Vodder Manual Lymph Draining (MLD) in the treatment of Cellulite and other Lipodystrophies it says: “Small vessel fragility, vessel pathologies and inflammation all contribute to the formation of lipoedema.” And: “…the protein build up thickens the ground substance of the tissue and generates chronic inflammatory processes. Chronic inflammation can induce formation of more mature adipocytes and lipid accumulation.” It says that when lipedema progresses, we’re dealing with chronic inflammation and the inflammation is causing weight gain.

Maggie McCarey and Stefanie Gwinn-Vega were way ahead of me. They found S. Nishimura et al (2009): “Recent studies have shown that obesity induces chronic inflammation in adipose tissue, and that cells of the innate immune system, particularly macrophages, are crucially involved in adipose inflammation and systemic metabolic abnormalities.” The fat isn’t just fat. It lives a life of its own. It secretes hormones into the bloodstream among others. While on the table  for liposuction we were talking about research into fat cells and the surgeon mentioned they found that fat even contains stem cells. I’m leaving it at this, this is a blog not a thesis, but for the skeptics and the interested: there’s plenty more to read. 

This leaves us…where?
We are currently being defined by two symptoms, one of them being fat. Thanks a million for the stigma. It is taking attention away of a factor we could fight (to a point): inflammation. I say enough with the fat already. Let’s look at the functioning of our immune system. Same conference, dr. Huijberts, based on preliminary outcomes of a questionnaire and her experience as an endocrinologist, linked a high percentage of lipedema patients to CFS and fibromyalgia-like symptoms, believed to be autoimmune related.

We’re not reaching here: inflammation simply is one of the first responses of the immune system to fight infection. Now, I don’t come with a lab coat and 8 years of medical school, so whether it’s truly autoimmune or what, I can’t be sure. What I can conclude is that our immune system is somehow getting its signals crossed; hence we respond with inflammation where others just move on and shed the pounds of holiday cheer.

What about hormones you say? Dr. Pick has a shocking quote for you: “Inflammation caused by hormonal imbalance could be a key reason why women suffer 75% of all autoimmune disease.” Ouch…