All It Took Was Some Grassroots Women Silently Suffering Lipedema

To raise awareness of this largely-overlooked disease, and the collective the magic of ‘we are in charge of this,’ was quickly born

Just for transparency’s sake, this article is not to do with lymphedema, which is explained in this article, and is a very different condition.

Nor is this written as a reference for curing lipedema. That is not my intent.

But, I have written this article about a friend who managed to put her condition, and her pain, into remission.

This allowed her to regain control of her life, her freedom, and alleviate many medical conditions that had hitched a ride in her body.

It also paved the way for a whole new her to emerge, one who no longer hid herself away in shame.

I am not a medical practitioner, so I don’t seek to offer advice. Rather I want to share some stories and some proven strategies that may help the condition, and give hope to women who may have given up on ever finding relief.

“When it was first described in 1940 it was defined as the disproportionate and symmetrical accumulation of adipose [fat] tissue on the lower half of the body combined with fluid retention.

‘While the name combines the medical words “lip” (fat) and “edema” (swelling caused by excess fluid), the role of fluid retention from the lymphatic system in the early stages of lipedema has recently become controversial. Some have even argued the name should be changed to lipalgia, for painful fat.’

The traditional belief about lipedema was that, neither the condition, nor the symptoms, could be turned around, or even relieved, by diet.

The confusion about lipedema versus obesity

Often lipedema and obesity are lumped together because women with the condition, are often also overweight, a pigeon pair, a concept that must be turned around.

There are many diets that target obesity, but none, until very recently, that was considered helpful for lipedema.

But now, hope is on the horizon.

‘In honor of Lipedema Awareness month, this feature article tells the story of a growing grassroots movement of women who are raising awareness about this challenging condition and sharing resources and encouragement about doing the ketogenic diet for lipedema.’

In this Diet Doctor article, cases are presented of women who have successfully embraced a ketogenic diet and turned their conditions around to a large extent.

I don’t plan to write about every case, but I do want to present Catherine Seo’s inspirational story in the first instance. Who knows? Had she not been a professional psychologist with a solid background in research, we might not have been reading about her and her movement.

Hers is an impressive story that deserves to be shared.

Let’s meet her

She’s a psychology professor who has spent a lifetime battling her weight, and for the most part managed to keep it under control.

But as with most women who struggle with weight, however active they are, menopause comes along, takes charge, and virtually laughs in their faces.

Catherine was putting a lot of weight on her lower body. This came with pain, lots of it, and she was struggling to remain active, and because she could find no comfort from doctors, she started her personal research.

Fortuitously she happened to have been given a book that explained the lymphatic system which she read intently, and THERE she found her condition.

Can you even imagine her relief?

This led her to begin seriously researching the condition, travelling far and wide to speak with women with lymphatic issues, to listen to and share their stories.

She interviewed lots of women with the condition.

‘Many carried emotional and psychological scars from being stigmatized for their weight, feeling blamed by others, and blaming themselves for being unable to change the look and feel of their hips and legs.’

This led her to her making a documentary on the subject, and to co-found lipedema simplified, plus begin an advocacy group, the lipedema project.

‘Similar support groups in the last decade have also been established in other countries, such as Lipoedema UK. (Lipoedema is the UK and European spelling.)’

Knowing that these groups are being established is comforting, yet there needs to be a mainstream approach to this that starts in the GP’s office.

I see many women when shopping who are struggling with the condition.

Pushing trolleys seems such an effort. They are clearly in pain, and would benefit greatly from a thorough assessment, rather than the usual advice to get active.

Get active, is what my friend was told. She wasn’t active because she couldn’t get active, a double-edged sword.

We need to stop the shaming and resurrect a: let’s get to the bottom of this, approach.

It’s interesting how movements and research can serendipitously be catapulted into eureka movements!

‘Seo was attending a research symposium on lymphatic disorders at the US National Institutes of Health in Bethesda, Maryland, as was California occupational therapist Leslyn Keith, who specializes in the treatment of people who experience lymphedema (limb swelling with lymph fluid) after cancer treatment or due to morbid obesity.

‘Keith was doing a poster presentation of a small pilot study she had conducted on the ketogenic diet for lymphedema. She’d enrolled 12 of her patients into a 12-week guided program that educated and supported them in doing the ketogenic diet. The average starting weight of the patients was 237 pounds, with a starting BMI of 38. Most had lymph swelling in both legs.

‘Of those who adopted the keto diet and completed the study, all experienced positive results, including a reduction in body weight of at least 8%, reduced body mass index (BMI), reduced fluid retention, decreased limb size, and improved quality of life.

‘The study was very small, but the conclusions were very suggestive that weight loss can have a significant impact on lymphedema and quality of life. And a ketogenic diet may be the more successful method to achieve that weight loss,’ Keith says.

Can you imagine Seo’s excitement? She asked if this could work for people with lipedema.

One question…a simple one, but this one query had the two women working closely together for a year or so, after which they lodged a webinar to introduce lipedema sufferers to the protocol of a ketogenic diet.

There is no doubt that the ketogenic diet has exploded in popularity for all manner of illnesses, many of which resisted traditional medical intervention, ‘people looking to lose weight and improve health concerns related to insulin resistance or dysregulated blood sugar. However, the efficacy of very-low-carb diets doesn’t end with weight loss and metabolic issues. Emerging research suggests that the ketogenic way of eating may have a potential therapeutic role across a broad range of diverse applications, including migraine, gastroesophageal reflux disease (GERD), Parkinson’s disease, binge eating disorder, various mental health concerns, and rare conditions such as McArdle Disease, a form of glycogen storage disease. Another debilitating and difficult-to-treat condition that may be favorably impacted by ketogenic metabolism is lipedema.’

Clinical trials and patient anecdotes suggest that adherence to a KD results in a “profound reduction” of lipedema pain, and being that this improvement may be experienced in as little as two weeks, it appears to be independent of weight loss. (Indeed, KDs have been shown to exert beneficial effects in other conditions independent of weight loss, including reversing metabolic syndrome.) The authors also speculate that if pain is reduced, some lipedema patients may experience improved mobility, which could improve quality of life. Ketogenic diets are showing promise for benefitting those with depression and anxiety disorders, so there may be a rationale for implementing this nutritional strategy to alleviate some of the psychological difficulties of living with lipedema.’

Lipedema ladies experience the following benefits from a keto diet:

• reduced swelling
• decreased or complete resolution of pain
• weight loss
• increase in mental clarity
• decreased size of the lower body
• improvement in quality of life
• improvement in mental/emotional state

A ketogenic diet for lipedema is still very much in its infancy, but the signs are promising.

That patients are enjoying huge pain relief, are reducing fat storage generally, as well as becoming more confident, speaks volumes. It’s also exciting.