National Lymphedema Network: Nearly 3 Decades of Service

In 1985, lymphedema was a relatively unknown condition.  At the time, NLN founder Saskia Thiadens ran Aurora Manor, a post-operative care facility in San Francisco. It was there that she saw a patient with an extremely enlarged arm who had undergone breast reconstruction after a mastectomy-- it appeared that she had an allergic reaction from the intravenous.

As a registered nurse and caregiver, Saskia immediately called her surgeon to express concern. He laughed, shrugged it off, and said that she had the swelling in her arm for nine years. He concluded that there was nothing that could be done to improve it, with no consideration about the underlying cause and possibilty of treatment. Reaching out to local colleagues yielded the same type of responses. They said that the patient had lymphedema as a result of her breast cancer surgery, and no effective treatment was available.

Shortly thereafter, Saskia opened the first lymphedema clinic in the United States (Aurora Lymphedema Clinic, 1987), and quickly became aware of the enormity of lymphedema and its unknowns. The phone did not stop ringing. Patients, both young and old with swollen arms/legs, were calling the clinic, hoping for help.

This led to the realization that there was a desperate need for awareness, education, and most importantly, an effective treatment for lymphedema. To that end, in 1988 Saskia helped found the National Lymphedema Network (NLN), a tax-exempt, non-profit organization that now comprises healthcare providers, researchers, lymphedema patients, and patient advocates—all dedicated to making information about lymphedema available to medical professionals, lymphedema patients, and the general public.

It was important to expand the knowledge of this disabling condition as quickly as possible in order to give relief to the ever-increasing number of patients presenting themselves daily at the clinic and across the country. After many meetings throughout the country with other medical professionals, and attending various conferences, especially surrounding breast cancer, the NLN started to grow a steady network of medical professionals with knowledge and/or interest in the lymphatic system. At the time, there were no doctors or other healthcare professionals able to diagnose, treat, or refer patients with lymphedema.

The journey began with only a few patients, but soon the NLN was advocating for the thousands of people suffering with this ignored disease. Now, more two decades later, the NLN has joined forces with the oncological community as well as other disciplines. Lymphedema is now identified as a legitimate disease in the United States. The current standard of treatment, complete decongestive therapy (CDT), is in place at university-based clinics, hospitals, rehabilitation centers, and free standing facilities; thousands of clinicians have become certified lymphedema therapists; physicians have included the lymphatic system into their existing practice; research is in progress in academic institutions; and patients are actively advocating for their rights and convincing their state and federal representatives to get laws in place to support proper treatment and reimbursement.

The National Lymphedema Network's goal is to ensure that all patients with lymphatic disorders receive the care they deserve.