Men with lipedema

By Tatjana van der Krabben

“There are only two known cases of lipedema in males.” Does that line look familiar? The overview papers are quick to quote this line. Too quick.

This blog is because we care about the men in our lives and share the concerns of women who suspect their male relatives may have the same genetic flaw.

Seven cases found in literature

N. Laleman (2011/2012) wrote the dissertation Lipoedeem: Pathofysiologie, diagnose en behandeling (University of Gent, Belgium). She has traced seven cases of lipedema in male patients with reference to the following papers:

* Langendoen et al (2009) Lipoedema: from clinical presentation to therapy. A review of the literature.

* Fonder et al (2007) Lipedema, a frequently unrecognized problem.

* Chen et al (2004) Painful fat syndrome in a male patient.

Seven cases she found. Not one or two, which is usually being quoted off each other. What I also like about this dissertation is that Laleman states that only seven cases were described in literature. Not that there only are seven cases. That brings me to my next point.

Not every case is mentioned in literature

That’s right. Despite the fact it’s still rather unique in literature, not every doctor coming across a case has jumped to the opportunity to publish on it. My first (digital) encounter with a male patient was in 2008, just after I got diagnosed. I’m a research junkie and got a lead: liposuction. At the time it was more difficult to find information, so I also checked out forums. I came across a depressed man, desperate for liposuction, but without funds and so far no help from his health insurance; he had lipedema. He implied he would kill himself if he couldn’t get liposuction and look ‘normal’ again. I was feeling rather frail myself, coping with my own diagnosis. I wasn’t at that place in my life where I felt strong enough to reach out. I lost sight of him.

The second time was when brainstorming for the book Lipedema: Help, Hope, Healing. We were unhappy with the lack of practical information, awareness and support. We wanted to do something with that. While going over genetics, Maggie McCarey pointed out she not only had female relatives with lipedema, but also male relatives: both her father and grandfather had lipedema. Her father was formally diagnosed, but never made a paper. Looking back, Maggie realized her grandfather must also have been among the long line of relatives with lipedema.

Through Big fat legs (www.bigfatlegs.com) we know of 3 more cases. Two formally diagnosed and one currently getting tested in a renowned clinic to get diagnosed. Big fat legs (by Maggie McCarey and Stefanie Gwinn Vega) is commonly found by people who have had quite a journey already with their symptoms, but are struggling to get diagnosed or just got diagnosed. People, yes, sometimes men as well, trying to figure out why they have unexplained ‘fat legs’.

And there’s more, although not formally diagnosed at this point. Some women with lipedema have expressed their concerns on forum about their sons, having unusually large legs in comparison to the rest of their body.

How male cases are more or less being dismissed

Each male patient was also diagnosed with a hormonal imbalance (Laleman 2011/2012). As a medically untrained person I say “So?”. With women it tends to flare up with hormonal changes. It’s not like we’re so well balanced hormonally at these stages of our lives. Although not in the literature yet - that is to the best of my knowledge - several doctors (Herbst and Huijberts) have gone on record in lectures pointing out the risk of contraception with hormones in case of lipedema. It can cause the lipedema to flare up. They mostly spoke of birth control pills, but in recent years many women have been getting rid of coils with hormones and HRT etc. and are feeling better for it. That’s nothing formal, tested, medically acknowledged at this point, but still.

Another point is that (modern) diet/food, stress, sleep (deprivation) also affects hormonal levels. What is stable in this context? When is it as it is supposed to be? But I’m digressing here.

With so few cases on record it’s tempting to rule out male cases in front of your nose. It’s so rare, so this probably isn’t lipedema. Mind you, some papers even dare state only women are affected. What if your primary happened to google one of those papers? Rare, I hate that label. Rare is an excuse to dismiss it. Lipedema in women is even still being referred to as rare. No, it’s not rare, it’s often not diagnosed due to lack of knowledge of lipedema and fat bias. In men it may be rare, but it does exist. The notion is not even new: the first male case that made literature was among the 119 case studies by Wold, Hines and Allen in 1951.

With the hypothesis spreading that it is (part) genetic, we must acknowledge that men are very much part of our gene pool. They may be carriers or worse, get afflicted. For all those looking to get help for their male family member(s): if he does have lipedema, he is not alone. For sure.