What are the best resources for LE?

cowgal · January 2011

I developed LE and started having to wear a compression sleeve towards the end of December and was told it may or may not go away. I have not been sent to any kind of therapy for it and feel like while I understand what it is, I probably need to know more about what to do, what not to do, precautions, etc. What are the resources that you would recommend and found helpful?

lago · January 2011

http://www.stepup-speakout.org

http://www.clt-lana.org/

Find a LANA certified therapist
http://www.clt-lana.org/therapists/default.asp

kira66715 · January 2011

Cowgal,

A few of us who post on these boards created a web site specifically to get the information together:

http://www.stepup-speakout.org/

On the home page, on the right, there are links to the National Lymphedema Network position papers and other papers.

Also, Joe Zuther has started a blog for patients, and it's really helpful, but first I'd suggest you look through the stepupspeakout site--specifically--how to treat lymphedema, how to find a qualified therapist and please let us know if that doesn't give you the information you need.

And while Lago suggested a LANA certified therapist, many therapists who are well trained--135 hours of training and supervision--are not LANA certified (which is a paper test) and are still excellent

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Also, there's a great link to a paper by Andrea Cheville of Mayo Clinic on why you should have hand compression with arm compression:

http://lymphedivas.com/lymphedema/gauntletandsleeve/

Sorry you've joined the "swell sisters" but welcome, and everyone on this board has great information.

Here's the link to Zuther's blog--but I'd suggest the general information on stepupspeakout first, and then ask us more--we all learn from each other.

http://www.lymphedemablog.com/

Kira

DiamondGirl · January 2011

Aside from the websites, I also borrowed a couple of Lymphedema books from the library. I was written a script to see the LE physical therapist by one of the rad onc while still getting radiation. My own rad onc didn't think I need it. Good luck to you.