Lipedema and eating disorders

By Tatjana van der Krabben

We sometimes read or hear about lipedema and eating disorders. Over time I encountered several ladies who had an eating disorder in the past. We know it’s there, but for me personally it was more like background information. A little surreal.

Today, on Twitter and on a forum I heard about a woman with lipedema who had developed anorexia. She lost the battle. Today it became more real than ever. Too real…

We all know what lipedema does. It takes nothing (much) to gain, but it takes blood, sweat and tears to lose weight. And you don’t get to lose it where you want it gone or to the point you want to lose it. At the same time many of us get encouraged to exercise more and eat less. Even by medical professionals and even if that is not realistic or what is truly needed. This is a red flag, people. A big one.

I got tempted to speak of support groups in this blog, but the truth is that eating disorders are a league of their own and very complex. Which leaves raising awareness, so people at least have a chance to learn about this piece of their health puzzle early. It’s good to see more and more lipedema patients are stepping forward and sharing their experiences.

Here’s to hope.

Is lipedema hereditary?

By Tatjana van der Krabben

Is lipedema hereditary? Interesting question. For starters, that is not proven. Yet? Another interesting question. If you ask me to speculate I wouldn’t go with hereditary full stop. And here is why.

Despite it often being quoted, lipedema is not a proven hereditary or genetic condition. Read the fine print; papers mostly say something like ‘possibly hereditary’ or ‘in part’. With family members displaying symptoms, one generation after another, going against the hypothesis of it being hereditary seems rather futile. Also, I can hear you gritting your teeth from here: “Is she implying I brought this on myself?!” Rest assured, I’m doing no such thing. But here’s some food for thought.

Regarding lipedema there are many assumptions going around. About percentages and numbers of women having it. Mostly 1 in 10 or 1 in 11 is mentioned to state the urgency of the matter. Sometimes in relation to a country or continent or even the world. Again, not proven. Worse, that’s just one estimate. Child et al (2009) came up with a minimum estimate of prevalence of 1 in 72.000. Those estimates are worlds apart. In a recent lecture dr. Damstra, a Dutch specialist, mentioned its occurrence in Asia is genuinely rare. So 1 in 10 in the world can’t be right. 1 in 72.000 sounds way to conservative to me; on an average summer day on a beach or in a theme park I encounter several ladies with lipedema. My point? Keep an open mind!

Am I playing it down? No. I believe the matter is actually getting more urgent. This is why. I’m coming from observation and am just hypothesizing, but the generation before me usually didn’t experience serious issues until menopause or a hysterectomy, often despite multiple pregnancies. As in, of course in retrospect there were some signs before, but their functioning was hindered only so much until then. My generation mblmmmb (read: forty-ish) experienced undeniable symptoms when pregnant. I now see girls still in their teens with stage 3. I also hear of more and more men getting diagnosed.

My generation did without junk food to mention of until our twenties. Soda bottles were made of glass until I was fifteen-ish and snacks and treats were limited to weekends and parties. I feel like we are the transitional generation in this picture. Of course in part this is the same debate as with autism and ADD etc.; is it getting more common or are more people seeking and getting help/diagnosis? No doubt more people seeking medical help has something to do with it. Something, but not all. I honestly see lipedema getting worse faster and faster.

Fact: the population as a whole is getting bigger. Fact: we get less exercise then we did in my grandmother’s day. Fact: our diet has changed tremendously from seasonally limited options and whole foods to mostly processed supermarket ‘food’. And here’s the thing we all know: let the average girl switch to granny’s whole foods and some exercise and her fat will melt away and with us not so much. Well, definitely not all of it. Also, we tend to gain faster eating the same type of food in the same portions. So, I’m leaning towards part circumstance and part predisposition. That would also explain how some manage to get virtually symptom-free by changing their lifestyle. If it’s genetics only, that would be rather strange, to say the least.

I’m not pulling a rabbit out of a hat here. Several researchers are hypothesizing along the same lines. This theory is telling me two things:

1. We run the risk of having an explosion of lipedema with young teens taking birth control already, supermarkets being the main food source for most which offers little whole foods and the increased digestion of xeno and phyto estrogens.
2. There’s a point to looking at circumstance and lifestyle. Change for the better what you can. Reduce inflammation, keep moving. Many are already travelling down that road with (some) success.

So, no, you are not to blame for developing lipedema. We all get caught by surprise, but please stay pro-active. It’s about quality of life. We all want it to be the best it can be. Right?