Why is a paradigm shift in the management of lipedema needed?
Prof. Tobias Bertsch began his presentation by stating that many physicians have a misconception regarding the difference between lipedema and lymphedema, which necessitates a clinical paradigm shift for adequate patient management.
The name lipedema suggests that there is edema, for which the treatment is manual lymphatic drainage and decongestion to enhance lymphatic flow and reduce edema. Many traditional experts say that lipedema is an edema disease and edema is the cause of the pain. But that makes no sense because then all patients with severe lymphedema would have pain too and that is not the case.
Prof. Bertsch provided some real-life clinical cases to highlight the difference between edema and lymphedema. He underlined that according to his daily clinical practice, none of his lipedema patients have substantial edema.
He stated that weight gain and obesity is an essential trigger to develop lipedema. He noted that managing obesity leads to treating lipedema and improving the clinical signs and symptoms.
He presented a case study of a patient with obesity-induced lymphedema developing lower extremity lymphedema. Using high-resolution ultrasonography, it was shown that there is no leg soft tissue fluid.
Afterwards, Prof. Bertsch demonstrated another clinical case of a patient with lipedema who had magnetic resonance imaging lymphangiography, which is more sensitive to soft tissue fluids when compared with ultrasonography. The findings revealed that the fat tissues are homogeneous and showed no clinical evidence of edema.
Prof. Bertsch highlighted that no imaging techniques like computerized tomography, magnetic resonance imaging, and high-resolution sonography have ever brought evidence for edema in patients with lipedema and that lipedema is a lymphatic condition that could develop into lymphedema.
He mentioned that at the Foeldi Clinic, > 85% of patients with lipedema are obese. Other centers in Europe report similar numbers. Additionally, ~50% of the patients have a body mass index >40.
He stated that it is incorrect stating that weight loss has no effect on lipedema. He presented his own clinical study investigating the clinical impact of undergoing bariatric surgery on reducing thigh volume in lipedema patients. The study revealed that patients with lipedema had thigh volume reductions comparable to or less than the control group.
Furthermore, Prof. Bertsch presented a clinical study that used pathophysiological and molecular techniques to examine the lymphatic tissue of lipedema patients. The study showed that lipedema has no morphological alterations in its lymphatic components.
In another clinical trial, lymphatic biomarkers revealed no differences in the number, size, and percent coverage of lymphatic vessels between lipedema patients and the control group.
The aforementioned studies showed that no obvious lymphatic abnormality underpins lipedema, indicating that the lipedema is not the same as lymphedema.
Prof. Bertsch concluded that with all the aforementioned consistent clinical and scientific evidence, the notion that lipedema is a lymphatic disease . Thus, a clinical paradigm shift in clinical practice is required.
What is the paradigm shift and the international consensus of lipedema?
He mentioned that according to the European Lipedema Consensus, two main criteria define lipedema: the first is the disproportional fat distribution of the legs and the second is the complaints arising from such fat tissue like pain, heaviness, tenderness—that are essential for the diagnosis of lipedema. In other words, to diagnose lipedema, it is not enough if the patient is just suffering from bigger legs.
75% of lipedema patients suffer first and foremost from poor physical fitness due to pain in the soft tissue and weight gain. Additionally, 80% of lipedema patients face mental challenges, such as eating disorders, depression, and chronic stress.
Such mental disorders existed prior to the onset of lipedema complaints, such as leg pain, due to the lack of self-acceptance as a consequence of society's existing beauty ideal. This is essential to understand, because something that precedes the development of lipedema cannot be its cause.
Consistent data has shown the impact of psychological issues and of chronic stress on pain perception. This is highly relevant for patients with lipedema. But in addition to these mental problems, there is also social pressure because of the current beauty ideal.
He stated that for the diagnosis of lipedema, it is not enough if the patient is just suffering from bigger legs. Other clinical factors should be taken into consideration:
- Poor fitness
- Weight gain
- Pain in soft tissues
- Lack of self-acceptance
- Mental stress
What should change over the upcoming few years in the management of lipedema?
He underlined that many patients come scared that lipedema is progressive. They see pictures of severely obese women and they read a lot of misinformation from some lipedema websites. As a result, they are afraid they will end up like many of these obese women. Therefore, the following actions should be taken:
- Lipedema misinformation and half-truths must be avoided.
- The difference between science-based knowledge and misinformation should be distinguished.
- The actual sufferings of lipedema patients should be focused on.
Finally, Prof. Bertsch listed the lipedema’s therapeutic pillars for adequate management based on the international expert group:
- Compression therapy
- Weight management
- Psychosocial therapy
- Self- management