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.
The website called Lymphedema People at www.lymphedemapeople.com is
a must to check out - there are 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
is a volunteer-run site: "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 National Cancer Institute (USA) has a section on
lymphodema starting on
this webpage or you can type lymphedema into the search
window on their home page at www.cancer.gov and click on Go. I
haven't read the section but it's likely to be very good.
The American Cancer Society also has articles on lymphedema
and they also are likely to be good. The quickest way to find
them is to go to the home page at www.cancer.org and type lymphedema
into their search window and click on Go.
The United Kingdom based website Cancerbackup at
www.cancerbackup.org.uk has a section on lymphedema and its treatment beginning on this page www.cancerbackup.org.uk/Resourcessupport/Symptomssideeffects/Lymphoedema.
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 (message board) called 'Lymphedema after surgery' where you can share support and information.
The Association of Cancer Online
Resources (ACOR) hosts a mailing list called LYMPHEDEMA - the
LYMPHEDEMA Online Support Group (363 subscribers when I checked
on 20th August 2008) - 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 Center', 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 20th August 2008.
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