The Unacceptable Neglect of Lymphedema by the Medical Community

After moving to the U.S. in the early 1990s I learned that in this country adequate Lymphedema care was not a well known part of the medical field; there were a handful of treatment centers scattered throughout the country, and institutions for the training and education of health care practitioners in Lymphedema management were non-existent. Back in those days I was also talking to a large number of physicians about Lymphedema and was surprised to learn that the vast majority of these doctors, even specialists, such as vascular surgeons and oncologists, did not know what Lymphedema was, or how it should be treated. I was even told that Lymphedema was a “non-issue” in the U.S. and a “European problem”. Patients with lymphedematous extremities were told that there is nothing that could be done and that they would have to live with their swollen arms or legs.

Thankfully this situation has improved some over the past decades; many treatment centers for Lymphedema are now established throughout the country, and there are a number of excellent schools providing high quality training in Lymphedema management to health care practitioners. CDT is now recognized in the United States as the gold standard treatment for Lymphedema, and health care providers generally do a decent job in providing information on this condition and how to best avoid it following surgical procedures. However, the lymphatic system and Lymphedema are topics that are still often covered only marginally, or even ignored in medical schools and by practicing health care providers.

In a 2017 editorial published in Lymphatic Research And Biology by Dr. Stanley Rockson (Stanford University Endowed Professor of Lymphatics and LE&RN Co-Founder) headlined “Lymphatic Medicine: Paradoxically and Unnecessarily Ignored” highlights this problem, which in many cases results in debilitating problems for those patients affected by Lymphedema. The therapeutic tools for creating a better situation for Lymphedema patients do already exist, and a number of new and promising approaches to treat, and hopefully cure this debilitating condition are already in the pipelines as Dr. Rockson quotes in this editorial:

“This degree of medical neglect and ignorance should be unacceptable to all of us. We must acknowledge our duty to provide treatment and hope for the millions of Americans, and hundreds of millions globally, who seek answers as they attempt to cope with the stigmata of lymphatic disease. Many of these inequities are paradoxical and can certainly be rectified.”

In the presentation The Road to Curing Lymphedema on “Talks on Google” Kathy Bates, Dr. Stanley G. Rockson, and William Repicci (President and CEO, LE&RN) lead a discussion about the neglect of Lymphedema in the medical community, and explain the scourge of Lymphedema and Lymphatic diseases, and the way we can change the future of millions through activism and research. They highlight the challenges that patients face, and the current state of care and treatment.

Please watch this very informative video below

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