Lymphedema is swelling that occurs in one of your arms or legs, according to the Mayo Clinic. It results from a blockage in the lymphatic system, which prevents lymph fluid from draining. Lymphedema has no cure, but treatments such as lymphatic drainage massage and compression garments can help control it. Because it is a condition you must "live with," sharing with other patients can be helpful for information and support.
Lymphedema
Primary lymphedema develops when lymphatic vessels are impaired or missing. Secondary lymphedema is a result of damage to lymph vessels or removal of lymph nodes. Most lymphedema occurs due to damage from surgery or radiation and is often seen in breast cancer survivors. The lymphatic system is an important component of the immune and circulatory systems, carrying protein-rich nutrients throughout the body and filtering out bacteria, viruses and waste products. Medical treatments can help control lymphedema.
Support Groups
The National Lymphedema Network website maintains a list of support groups throughout the United States. You can access this information by putting in your ZIP code and how many miles you are willing to travel. You can also search by state. In addition, the Network has contact information on international support groups in Australia, Canada, Israel, New Zealand and Panama. LymphNotes, an independent source of information about lymphedema, maintains a list of support groups throughout the country on its website.
Online Support
The National Lymphedema Network also maintains an online support group you can access from its website by sending an e-mail. In addition, the site has a page devoted to people looking for pen pals or netpals to discuss their condition with. DailyStrength maintains an online support group for a number of different health conditions, including lymphedema. Both of these online support groups are free.
Tips On Starting a Support Group
If you can't find a local support group and you want to start one, the National Lymphedema Network recommends that you get the word out to lymphedema patients by posting a notice in church bulletins and treatment centers or with therapists who work with lymphedema patients. Advertise in local papers and on radio and television stations. Post notices in local pharmacies, health food stores and libraries. Contact social service agencies, local cancer support groups and Reach to Recovery. Tell your own medical team. At the first meeting, circulate a signup sheet for contact information for future use. Have literature available and propose a regular meeting schedule.
