Confessions of a Doctor With Lipedema

I have finally decided to confess to an embarrassing problem that’s affected me since I was about 12. I have lipedema.
 
I didn’t even know there was a name for it until I was a physician in my 30s and started running a wound center. Because of phone calls from desperate women with post–breast cancer lymphedema, I added lymphedema therapy services and invariably, when a clinic provides lymphedema treatment, patients with lipedema find their way to you. In trying to understand what was going on with patients who had dramatically disproportionate fat deposits, I discovered that my own condition had a name. I certainly did not learn about it in medical school.
 
Lipedema is a genetically mediated pathological accumulation of fat, usually below the waist and in women, that is diet resistant. It’s considered an inflammatory subcutaneous adipose tissue disease that may progress to lipolymphedema, a condition similar to lymphedema. Over the years, I have spent a lot of time and money trying to mitigate the visible signs of lipedema—constantly restricting calories and having surgical procedures.
 
We see so many sad and horrible wound problems that it can be difficult to be sympathetic to patients who just look—well, fat. In many cases they do suffer from obesity, but even if they are successful at losing weight, patients with lipedema have little change in the size of their thighs and legs, hence the term “diet-resistant fat deposits.”
 
It is hard to understand how demoralizing it is. Lipedema affects your entire life, starting in the teenage years. It determines what activities you participate in during and after high school, it determines what clothes you wear, and eventually, whether and whom you marry.
 
I am a firm believer that while we can’t choose what happens to us, we can choose how we react to it. My reaction to this lifelong personal challenge was to try to understand it a bit better. I am no expert in fatty deposition disorders like the amazing Karen Herbst, MD, PhD, but in conjunction with Eva Sevick, PhD, and her team, have used near-infrared lymphatic imaging to better understand lymphatic function and anatomy in the early stages of both lipedema and lymphedema. We published a paper on this in the journal Obesity in 2022.¹ The question we wanted to answer was whether the lymphatics of patients with early lipedema were the same or different from the lymphatic abnormalities we have identified in patients with lymphedema. In patients with lymphedema related to cancer and in primary lymphedema, real-time lymphatic imaging with indocyanine green shows dilated lymphatic vessels, impaired pumping, and dermal backflow, so we know what abnormal lymphatics look like.
 
We did a pilot study of 20 women with Stage I or II lipedema that had not progressed to lipolymphedema, and assessed their upper and lower extremities using near-infrared fluorescence lymphatic imaging.¹ We compared them to a control population of similar age and body mass index. The study showed that in early lipedema sufferers, lower extremity lymphatic vessels were dilated and showed intravascular pooling, but the propulsion rates of the lymphatics significantly exceeded those of control individuals. In contrast to individuals with lymphedema, individuals with Stage I and II lipedema did not exhibit dermal backflow.
 
In other words, the lymphatics of early lipedema patients appear quite different from those of lymphedema patients. Lipedema patients have lymphatic vessel dilation but don’t have lymphatic dysfunction—at least, early in the lipedema disease process. Something definitely goes wrong later (at least in some patients) to cause lipolymphedema, but the process is somehow different than lymphedema. We will need a lot more work to understand why some patients with lipedema develop lymphedema. I have published papers describing the various clinical presentations of lipedema so that wound care clinicians could be more aware of it, and have given a lot of lectures over the years—all with the goal of helping providers be more sympathetic and to help them differentiate between lymphedema and lymphedema.
 
There was a time when we had little to offer cancer survivors with lymphedema. That situation has changed. Now treatment is available and legislation has even been passed to help with insurance coverage. Until now, we’ve had little to offer lipedema patients in the way of treatment, other than sympathy. Now there may be some light on the horizon for them. In this issue, Nadiv Shapira, MD, and Larry Wagner have written an article called “Supporting Providers in Treating Lipedema,” in which they talk about the Lipedema Treatment Network which they founded, the goal of which is to connect patients with lipedema to physicians who can remove the fat depositions using specialized liposuction.
 
I had the resources to find treatment for myself but it was not easy. I am thrilled that at last, there is a treatment resource for patients with lipedema.
 
Caroline E. Fife is Chief Medical Officer at Intellicure Inc., The Woodlands, TX; executive director of the U.S. Wound Registry; medical director of St. Luke’s Wound Clinic, The Woodlands; and co-chair of the Alliance of Wound Care Stakeholders.

Reference
 
1. Rasmussen JC, Aldrich MB, Fife CE, Herbst KL, Sevick-Muraca EM. Lymphatic function and anatomy in early stages of lipedema. Obesity (Silver Spring). 2022; 30(7):1391–1400.