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.)
The Lymphoedema Support Network at www.lymphoedema.org/lsn/index.html
"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).
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).
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 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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