About Lymphedema

Lymphedema is a chronic and debilitating medical condition where protein rich fluid inappropriately accumulates in areas of the body that have ineffectual lymphatic channels and/or lymph nodes. Long-term stasis of interstitial fluid results in abnormal enlargement of the affected region, fibrosis and soft tissue scarring, pain, decreased mobility and function, and an increased risk for repeated infection. In its most severe form, chronic lymphedema can lead to angiosarcoma, a highly aggressive cancer that often leads to amputation and premature death.

Although lymphedema affects nearly 5 million Americans, this disease has gone unrecognized by the medical community at large. Most often, it is seen as a poorly understood complication of cancer care either from surgical removal of a malignant tumor and its associated lymph node basins, from irradiation therapy, or from a combination of both of these worthy oncologic interventions. World wide, lymphedema is most commonly secondary to filarial infection in areas endemic for Wuchereria bancrofti, Brugia malayi and Brugia timori. Typically, this parasitic nematode infection results in lower extremity and genital elephantiasis and significant morbidity. Smaller populations of affected individuals suffer genetic disorders where functional units of the lymphatic system are either absent or dysfunctional. Genetic disorders commonly involve not only the extremities, but visceral organs and present with life threatening conditions early in a child's development.

It is unclear why lymphedema has evaded the medical community at large in the United States. Some speculate that socioeconomics have come into play as many affected individuals become disabled and loose high quality health insurance coverage. Others note the slow identification of "palliation" as an important aspect of cancer care. Regardless, lymphedema is now just emerging as a significant health care issue — a new notoriety primarily due to public awareness of breast cancer survivorship.

The National Institute of Lymphology (NIL) is a consortium of health care providers dedicated to the evaluation, education and care of individuals affected by lymphedema. With a focus on evidence-based clinical outcomes research as a unifying core principal, the NIL was founded as a means to promote exchange of information not only between patients and physicians, but between multidisciplinary care providers in order to foster a better understanding of patient needs and potential treatment options being developed every day in health care centers through out the United States and abroad.

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Best Regards,

Marga F. Massey, MD, CLT, FACS
Founder & Chief Participating Investigator

Scott K. Sullivan, MD, FACS
Chief Participating Investigator