A guide to the world’s best lymphedema websites
for information and support

I haven't had time yet to do a full search for lymphedema websites, but these are some good ones for information and support.

In some countries eg the USA the spelling is lymphedema and in others eg the United Kingdom and Australia the spelling may be lymphoedema. I will use lymphedema on this webpage.

First up, here are links to articles about lymphedema on three very good and reliable websites:

On the National Cancer Institute's website (www.cancer.gov) "Lymphedema" www.cancer.gov/cancertopics/pdq/supportivecare/lymphedema. Or you can type lymphedema into the search window on their home page and click on Go.

On the American Cancer Society's website (www.cancer.org) "Lymphedema: What Every Woman With Breast Cancer Should Know" www.cancer.org/docroot/MIT/content/MIT_7_2x_Lymphedema_and_Breast_Cancer.asp
and "Understanding Lymphedema (For Cancers Other Than Breast Cancer)" www.cancer.org/docroot/MIT/content/MIT_7_2x_Understanding_Lymphedema.asp
Or you can go to their home page and type lymphedema into their search window and click on Go.

There's an excellent and easy to understand article on arm lymphedema on the Breastcancer.org website www.breastcancer.org - look for the link 'Arm Lymphedema' under the heading 'Day-to-Day Matters' on the home page or try this direct link www.breastcancer.org/lymphedema_info.html. They also have a very active forum (discussion board) called 'Lymphedema after surgery' where you can share support and information. Look for a link to "Discussion Boards" under the heading "Community Knowledge" on their home page.

There's a straightforward explanation of lymphedemas including their causes, diagnosis, treatments and management, on the MayoClinic.com website (www.mayoclinic.com) at www.mayoclinic.com/health/lymphedema/DS00609.

Now here are some websites devoted to lymphedema that I suggest exploring to see what they have to offer that may be relevant to your situation:

The website called Lymphedema People at www.lymphedemapeople.com has active forums, and plenty of information including many links to other relevant sites, and links to other support groups. The website is the creation of Pat O'Connor, born with active primary lymphedema.

The National Lymphedema Network (USA) has an informative website at www.lymphnet.org, including a long list of contact details for support groups.

Lymph Notes at www.lymphnotes.com has easy to understand articles on many aspects of lymphedema and has some forums too. (Lymph Notes has sponsors who pay for a presence on the website and are encouraged to participate in the forums, so do keep that in mind when you use the site.)

"Step Up, Speak Out" at www.stepup-speakout.org "Resources, support and advocacy for women and men with breast cancer-related lymphedema". This website has a lot of information about lymphedema and its treatments, and links to resources etc. I haven't examined it in detail but it looks like it would be a valuable resource for people with any kind of lymphedema and well worth exploring.

The Lymphoedema Support Network at www.lymphoedema.org "is a registered charity and the UK's national patient support organisation for lymphoedema" and "The Charity has become the largest information resource for lymphoedema in the UK" (quoted from their website).

The website UKLymph.com at www.uklymph.com was "set up in conjunction with the East Kent Lymphoedema Support Group to offer online support and advice to Lymphedema sufferers", and hosts "the largest lymphoedema chat forum on the internet" here www.uklymph.com/forums/.

Lymphovenous Canada at www.lymphovenous-canada.ca - "The purpose of this site is to link people in Canada with dysfunctioning lymphatic systems with health care professionals and support groups in their communities and around the world. Through this site we will keep you informed of some of the latest developments in scientific research and treatment in this area" (quoted from their website).

YouTube at www.youtube.com has numerous videos relating to lymphedema. Simply go to their home page and type lymphedema into the search window. You can probably find a few that are relevant to your situation. I haven't had time to watch them and recommend some. I suggest keeping a wary eye out for ones that are made by charlatans touting the magical properties of alternative treatments or management practices of little or no benefit.

You can find a variety of information on lymphedema specialist, author and teacher Joachim Zuther's website www.lymphedemablog.com.

The Association of Cancer Online Resources (ACOR) hosts a mailing list called LYMPHEDEMA - the LYMPHEDEMA Online Support Group (366 subscribers when I checked on 25th January 2010) - you can find the list by going to the home page of the ACOR website at www.acor.org and clicking on the link 'Mailing Lists', or try this direct link http://listserv.acor.org/archives/lymphedema.html.

More to Explore A young woman has created a blog about her life with primary lymphedema, at www.lymphedemagirl.blogspot.com. She says "I write about my daily life with lymphedema, my thoughts, my hassles and my tips on living with this condition".

More suggestions please

If you know of any other good lymphedema websites large or small, or active forums (message or discussion boards) or mailing lists on lymphedema you would like to see added to this page, or you find any errors or broken links, please send me an email at
everest@bestcancersites.com.

Ed Everest, Adelaide, Australia

Page updated 25th January 2010.

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