South Jersey Lymphedema Support Network
Disclaimer: As a purely volunteer effort, we have established the Southern New Jersey Lymphedema Support Network. We are a small group of lymphedema patients and their families who get together to share information and lend support to each other. We are NOT physicians. Any information posted on this web site is purely on a non-professional basis. If we can help to answer some of your questions pertaining to lymphedema, we are happy to do so, as long as you remember that we are only patients, just like you. In trying to research lymphedema, we have discovered that there is very little information, and even fewer doctors who know a whole lot about this ailment. We, therefore, felt there was a need for those of us involved to help each other as much as possible. Any information we may have collected, we are glad to share with you. If you have any information, we would love to hear from you also. Together we can support each other through the difficult times associated with lymphedema.
(Information below is solely from a booklet received from and written by The Lymphedema Assoc. of Australia, Inc.)
(Click on blue links for more information.)
When does Lymphedema occur, and how rapidly?
- Once the lymphatics are damaged, lymphedema may occur at any time. Sometimes it starts at once and lasts for life; sometimes it occurs for a few weeks, goes away and may or may not return; sometimes it appears years after the event. Once the lymphatics are damaged, a very trivial thing may set it off, (e.g. a bee sting, sunburn, carrying heavy weights, or a long aircraft flight.)Apart from that which occurs briefly after the blockage and then goes away, once lymphedema starts it gets worse and worse. This worsening is usually slow in primary lymphedmas and rapid in secondary ones. It is usually a steady increase unless some inflammation occurs (e.g. infection), when it gets worse very quickly.
Grades of Lymphedema
- Grade 1 swelling will pit if the skin is pressed and is reduced if the limb is elevated.
- Grade 2 has much more excess fibrous tissue, so it does not pit, is not much reduced by elevation. There may be gross changes to the skin (elephantiasis).
Numbers of Patients
- Lymphedema is much more common than is normally realised. For example, lymphedema following mastectomy alone affects, or will affect before they die, 100,000 of the women in Australia. Of these, some 10,000 will have it severely. To this nmber must be added all the lymphedemas following other operations, accidents, chronic venous diseases and the primary lymphedemas. It appears that there are about 200,000 people with some form of lymphedema in Australia at the moment.
- The world health Organization estimates that 100 million people have filaritic lymphedema and elephantiasis. There are some 500 million sufferers from all forms of lymphedema in the world.
Prevention: General Do's and Don'ts
Send us E-Mail(click on frog below)
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I have not personally visited each of these links. I did an internet search for "lymphedema" and came up with thousands of possibilities. These are just a few from the beginning of the list. As of Jan 1, 1998, the links listed were still active. If you find a link that is especially informative, please let me know. If you find that one I have listed no longer exists, please let me know that also.
Click here to visit:
The National Lymphedema Network
University of Oklahoma Medical School
Dr Vodder School of North America
How about Lymphedema in Australia?
Lymphedema Support Group of Greater Boston
or
Choose your favorite search engine and do a search of "lymphedema" or "lymphoedema". Spellings vary in different parts of the world.
Page accessed
since Jan 12, 1998
Webpages by C. Walsh
