National Lymphedema Network

National Lymphedema Network
Founded: 1988

Mission:
To create awareness of lymphedema through education, and to promote and support the availability of quality medical treatment for all individuals at risk for or affected by lymphedema.

Background:
In the early 1980s, lymphedema — an accumulation of lymphatic fluid in the interstitial tissue that causes swelling, most often in the arm(s) and/or leg(s), and occasionally in other parts of the body — was considered an obscure condition and generally written off as extremely rare, untreatable, and of little importance or interest to the American medical establishment. But NLN founder and executive director Saskia Thiadens, who was running a post-operative care facility in San Francisco, had already encountered many cases of lymphedema in patients that were referred to her after breast-reconstruction surgery. Typically, surgeons said it was a result of the breast-cancer surgery and that nothing could be done. This lack of response to patients' needs led Thiadens to research treatment options in the Bay Area and the rest of the country, and she quickly realized the extent of the misunderstanding and ignorance surrounding lymphedema that prevented patients from receiving the education and care they deserved. Convinced of the need for education for professionals, patients, and the general public, Thiadens opened the first lymphedema treatment clinic in the U.S. in 1987 and soon thereafter founded the National Lymphedema Network.

Current Programs:
NLN provides information, education, and guidance to health-care professionals, patients, family members, and the general public. Last year alone, the organization provided assistance to more than 36,000 callers through its toll-free and direct lines and mailed its quarterly newsletter to over 3,000 members around the country. The organization continues to support further research on lymphedema, to co-sponsor Lymphedema Awareness Day events (March 6) in various states, to support legislation to protect and assist lymphedema patients, and to present a national biennial conference that welcomes health-care professionals, patients, and policymakers from around the country and the world.

Recent Successes:
This year, NLN hopes to develop and implement the first NLN chapters nationwide, with an eventual goal of establishing a chapter in all fifty states. In September 2000, NLN held its Fourth International Conference on Lymphedema, which was attended by some 650 patients, activists, and health-care professionals.

Web Site:
The NLN Web site (www.lymphnet.org) is a major source of information for the general public, lymphedema patients, and health-care professionals worldwide. Among other items, it provides an online resource guide listing treatment centers, therapists, support groups, MLD training programs, and more. Visitors to the site will also find articles on state-of-the-art developments in the field, responses to questions commonly asked by lymphedema patients, information on current legislation affecting treatment of lymphedema, and information about precautions one can take to prevent the incidence or worsening of lymphedema.

Funding Needs:
NLN's top funding priority is the development of a chapter program that it hopes to implement in the first half of the year. The organization's eventual goal is to have a chapter in every state in the country so that local support, resources, and education will be available to meet the needs of both urban and rural communities nationwide.

Contact: Patricia J. Egan, Executive Director
Phone: 510.208.3200
Fax: 510.208.3110

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