by Guy S Eakin, PhD
It’s one thing to be acknowledged, and another to be recognized.
The American College of Cardiology (ACC) recently published its view of the competencies that are expected of practicing vascular medicine specialists [1]. Not only does it acknowledge Lipedema, but it also recognizes Lipedema a distinct entity from the lymphatic disorders with which it is normally grouped. The bold face section title says it all: “[Section] 4.2.7 Lymphatic Diseases and Lipedema.”
The report itself is the joint effort of an 18-person committee including official representatives of the ACC, AHA, ACP, ABC, SCAI, SVM, and the SVS.* The committee was supported by an additional 25 multi-disciplinary peer reviewers, an impressive number that just barely exceeds the rather impressive number of letters in the organizational abbreviations.
The recommendations detailed in the report are intended to guide training for cardiologists who complete a 3-year fellowship and elect to specialize in vascular medicine. In the United States, this is achieved through an additional year-long “advanced vascular medicine fellowship” followed by an examination by the American Board of Vascular Medicine.
To contextualize the importance of being acknowledged and recognized, we have to look at Lipedema as an emerging field. Worldwide it remains underdiagnosed. Even in countries like Germany and Switzerland, where Lipedema is more commonly diagnosed, women may average 15 years before a diagnosis is made [2]. In the USA, patients are routinely surprised to learn it still lacks an appropriate ICD-10 designation [3], making a difficult diagnosis even more difficult to find in the medical records.
We also know very little about the causes. Competing literature can be found to firmly reject -- or just as concretely declare -- Lipedema as a lymphatic disorder. The ACC guidance takes a high ground on this point, acknowledging Lipedema’s relationship to lymphatic disorders but recognizing the complexity of the field. They imply that the larger issue may simply be that Lipedema patients require special consideration.
Thus, it’s gratifying to see the expectation that future specialists will be trained such that, “Using clinical examination and testing when appropriate, the trainee should be able to distinguish between lymphedema and Lipedema and determine a management plan.” The report specifies an understanding of “symptoms and physical findings of Lipedema” and management strategies like manual lymphatic drainage. This directly addresses the long delays leading up to diagnosis by ensuring specific training on the needs of Lipedema patients.
It’s notable that advanced training will introduce them to understanding the “pathophysiology, causes, and clinical epidemiology of Lipedema.” Given the issues and uncertainties that swirl in the small field, at face value we might ask whether enough is known to require this. But the hope for patients, and for the field, is that exposure to these uncertainties sparks curiosity. Our hope is that these newly emerged, and exceptionally trained, vascular medicine specialists will see - and take advantage of - the fantastic opportunities they have to solve those problems, and help so many people along the way.
Congratulations, and thank you to the ACC and its allied societies for advancing the Lipedema movement one step forward.
*American College of Cardiology (ACC), American Heart Association (AHA), American College of Physicians (ACP), Association of Black Cardiologists (ABC), Society for Cardiovascular Angiography and Interventions (SCAI), Society for Vascular Nursing (SVN), and the Society for Vascular Surgery (SVS)