Welcome Back and Introduction to Lipedema
Welcome to Lipedema Simplified’s Living Well with Lipedema blog! I am so excited to bring you weekly posts about all aspects of lipedema, from new studies to treatment options and diet information.
As an introduction, I serve as President of the Board of Directors for The Lipedema Project, and I have a Clinical Doctorate in Occupational Therapy with an emphasis on lymphedema and obesity. I have been treating lymphatic and fat disorders for over 20 years and have started four lymphedema therapy programs in California, including two in private practice. Currently, I research, consult, and lecture on lymphedema, lipedema, and obesity internationally.
The goal of Living Well with Lipedema is to provide updates in the world of lipedema in a straightforward and accessible manner. There is a lot of lipedema research going on, but it can be hard for people to make their way through a dense research paper and to understand how new studies may affect their own lives. One of the things I will be doing with this blog is unpacking recent papers that cover the many areas of lipedema research every week.
For this first post, I’d like to briefly step back and examine what lipedema is and how it affects women.
What is lipedema?
Lipedema (made up of lip, meaning fat, and edema, or swelling) is a deposition of fat and fluid on the lower half of the body that can give the appearance of a lower body, completely disproportionate from the upper half. Often confused with simple obesity, lipedema affects women almost exclusively. In fact, as many as 17 million women in the US and over 350 million women worldwide may have this disfiguring condition and may not even know it.
Lipedema doesn’t go away with typical weight loss methods.
Most people, including the women with lipedema themselves, would place the blame on out-of-control eating and a lack of exercise, or other lifestyle choices, and not on a medical condition. Women with lipedema are typically members of a not-so-exclusive club of “lifelong dieters” and have often faced anti-fat bias and stigma early in life due to their seemingly inability to “control themselves.” After decades of failed weight-loss attempts, many women have understandably given up. Although very low-calorie, low-fat diets would predictably reduce the size of their upper body, not even the addition of intense physical exercise would have any appreciable effect on lower body fat, often making the disproportion even worse.
Although lipedema shares some characteristics with obesity (which can often co-occur with this condition), lipedema is a disease with a distinct presentation and pathology all its own.
Symptoms of lipedema include:
Symmetrical maldistribution of lower body fat, with the feet unaffected, which may also include the upper arms
- Appearance of an “ankle cuff” as the fat deposits abruptly end just above the ankle
- Hypersensitivity to pressure and pain in areas of fat deposition
- Bruising with little or no evident trauma
- Grainy feel to fatty tissue due to nodules that can be sand grain or larger size
- Corrugated or “mattress-like” appearance of skin
- Progression, with increasing weight, fat deposition, pain, and swelling, if not managed
- Reduced quality of life due to immobility, isolation, and depression
What causes lipedema?
The onset and exacerbation of this condition are little understood. The first appearance of lipedema symptoms seems to typically coincide with periods of hormonal change in a woman’s life, such as puberty, pregnancy, and perimenopause, suggesting a connection to female sex hormones. Commonly, but not always, many women in a family will share symptoms of lipedema, suggesting possible genetic underpinnings. The onset of lipedema symptoms has also been associated with major trauma or surgery (especially gynecological surgery).
With that concise introduction to lipedema, I will wrap up the inaugural post of our blog here. Be on the lookout for regular posts each week! I’ve included resources below if you would like to learn more about lipedema and the work that we do at Lipedema Simplified and The Lipedema Project.
The Lipedema Project https://lipedemaproject.org/
Lipedema Simplified https://lipedema-simplified.org/
- Keto Lifestyle for Lipedema https://www.facebook.com/groups/LipedemaKetoWOE
- Lipedema/Lipoedema Simplified Support https://www.facebook.com/groups/LipedemaSupport/
Article on DietDoctor: https://www.dietdoctor.com/can-a-ketogenic-diet-help-lipedema
Link to our paper published in Medical Hypothesis https://www.sciencedirect.com/science/article/pii/S0306987720333260