Lipedema Awareness Month

June is Lipedema Awareness Month

The Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders (newly defined and described in 2017) come with myriad comorbidities or co-occurring conditions. So many in fact, doctors often fail to believe we could have so many things wrong with us.

I try to feature one or two of the most common ones each month on my home page for this reason. But this one is so often dismissed and denied due to fatmisia and fatphobia and medical misogyny, I felt it warranted a whole post.

Image of a white persons bare feet on a large analog style bathroom scale
A weighty issue

Especially since it’s far from rare, running as high as 10% of women and a few men and non-binary folks too.

Lipedema (not to be confused with the also highly co-occurring and better known lymphedema) is a fat tissue disorder causing unavoidable weight gain in a disproportionate way on the body, not usually seen with typical obesity.

Often times the legs will be disproportionately heavier or larger in size than the upper body, forcing some to buy a different size of clothing for their upper body than for their lower body. 

It is rarely recognized in its earlier stages, as most people write it off as regular obesity, when it is in fact not. It appears to run in a familial way, showing up most often in generations of women, but occasionally others too. And men can pass the trait down too, even if they’re not visibly affected themselves. This was true for my best friend, and author of More Than Fat.

There is most often a sudden onset of unexpected and initially unexplained weight gain at puberty and other times of significant hormonal changes in women, such as pregnancy and menopause. But it can also onset sometimes after trauma. (This makes me suspect over-active mast cells may lend a role in combo with some kind of underlying genetic and hormonal predisposition, personally.)

Some other characteristic signs include “cuffing” of the fat around the wrists and ankles, fibrotic “orange peel” skin, painful fatty lumps called lipomas just under the skin, and sometimes lobules. 

The fat does not respond to the traditional “diet and exercise” approach, unlike regular obesity. It can sometimes respond to a ketogenic (low-carb) way of eating, but every body is different. (A healthy diet is still recommended of course for overall health.) Sufferers should also be sure to rule out any thyroid dysfunction or disease as well, which can further complicate the picture.

Those with additional lymphedema may have a lot of trouble getting their lymph to drain back up toward the lymph nodes, and finally into the blood stream, where the waste products are then carried to the kidneys to be filtered out. This lends to additional weight and girth from fluid retention in the legs especially but also around the middle torso. (It is most often bilateral, that is, occurs evenly on both sides, but there are exceptions.)

These latter cases will often benefit from manual lymph drainage and dry brushing techniques to aid in this congested lymph drainage. Various compression garments and even sometimes air pumps for the legs may help at later stages too.

There is no known cure for lipedema as yet, only various management techniques which are being honed daily by the millions of people affected around the world along with a handful of rare experts

Some can benefit from some liposuction. But this has been known to backfire in a few cases, and the lipedema just recurs sometimes with what seems like a vengeance in some.

It is not yet known for sure what causes Lipedema. Experts and specialists are seeing a noticeable rate of comorbidity with the forms of EDS and Hypermobility Spectrum Disorders. Though these may be missed even more in heavier patients, as doctors will tend to only see the person’s size and weight, and not consider any other underlying conditions.

But both hypermobility and also highly co-occuring Mast Cell Activation Diseases (most commonly MCAS, but also some mastocytosis) may help explain a large number of symptoms and issues in lipedema patients not otherwise explained by their adipose tissue condition itself.

In fact, I personally strongly suspect that Dercum’s Disease is a name that was given to a subset of lipedema patients with lots of lipomas who also likely have MCAS and weak connective tissues from possible EDS or HSD. But that’s just my WAG to be clear.

You are not lazy or crazy, I promise! And you are not alone. Definitely find and check out some of the online support groups (there are several on Facebook, but also Inspire) and compare notes with fellow patients.

Much like EDS and HSD, lipedema is not rare, it’s rarely diagnosed.

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