The finer points of its definition continue to spark debate even among experts, but lymphedema is defined as an abnormal accumulation of lymph fluid in the interstitial spaces of the body's tissue. It generally affects only one limb, but multiple limbs, and the head and trunk may be involved, depending on the condition's etiology. Joachim E. Zuther, founder of the Academy of Lymphatic Studies, estimated that between three and five million cases of lymphedema exist in the United States.Those with an interest in lymphedema can explore and benefit from several resources.
Clinical Information
For an overview of lymphedema, go to this U.S. National Library of Medicine website of the National Institutes of Health. Anatomical diagrams supplement the descriptions of the lymphatic system and how it functions.
Because lymphedema can be related to cancer and its treatment, the National Cancer Institute website posts helpful information as well. There are considerations specific to cancer-related lymphedema such as the possibility of metastases and the effects of radiation therapy. Lymphedema treatment can be of benefit even in advanced cases when palliative or comfort care is the goal. Some material is also in Spanish.
Support
The National Lymphedema Network, a nonprofit organization founded in 1988, provides overall resources for both professional providers and those with lymphedema. Clinical and healthcare provider locator information is listed and updated periodically. General information and position papers are available with topics such as lymphedema risk reduction practices, treatment, exercise and air travel. Contacts for support groups are listed along with links to information for national conferences. A quarterly newsletter is included with membership. Lymphedema alert bracelets and educational material are available.
LymphNotes.com describes itself as an independent source of objective information. Research data and a variety of coping material are offered, with no charge for membership. LymphNotes does not accept advertising or endorsement of products or services, but it does support sponsorships for businesses related to lymphedema. The LymphNotes Editorial Board is made up of healthcare professionals and writers. A forum is available to members.
Local Resources
Resources will vary greatly depending on your location. It is not unusual for those in rural areas to find that the nearest certified lymphedema therapist may be hours away. Lymphedema therapists often practice in conjunction with cancer centers and wound care centers, so inquiring at these facilities is a good place to start if you have not found someone online. Word of mouth is another way to discover what is available in your area. A patient who recently presented for treatment reported she literally flagged down a woman wearing compression bandages to find out where she was being treated. The patient boasted that she not only got that information but made a friend in the process.
References
- Zuther, Joachim E.; "Lymphedema Management: The Comprehensive Guide for Practitioners;" New York: Thieme; 2005; p.47
- U.S. National Library of Medicine
- National Cancer Institute
