New LE Website--SteupUp-SpeakOut.Org

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OneBadBoob
OneBadBoob Member Posts: 1,386

Binney, Otter, Kira and myself have been working on a new website where we have tried to organize all of the information on lymphedema into easily accessable categories.

   

The StepUp-SpeakOut Website is Now Up and Running!

Visit Our New Website!  --We hope you will enjoy it and find it chocked full of information on lymphedema.

It is still a work in progress, but we have much information up, much more coming, and wanted to share with you all.

OUR MISSION

As women with post-breast cancer lymphedema we have struggled to uncover the
information we've needed about this condition, to find good treatment for it, and to keep it in control.

With the help of our fellow lymphedema sisters and brothers we have even
learned to live comfortably with it. Out of those experiences and a desire to share our discoveries with others, we have created this site in order to STEP UP:


To provide accurate and accessible information about lymphedema, its prevention and treatment, to all women and men who have been treated for breast cancer.


To raise awareness of lymphedema risk and promote risk reduction practices among all breast cancer veterans.


To support those with breast cancer as they pursue prevention and treatment options for lymphedema, and to help them find the resources they need for managing both the risk and the
treatment of this condition. 


To represent the concerns and interests of women and men with lymphedema
and advocate with them in the medical and research communities, the political arena, and among the general public.

To promote research into the prevention, treatment and cure of lymphedema.

If you are a woman or man who has been treated for breast cancer, we challenge you to SPEAK OUT about lymphedema, and join us in advocating for the treatment, services, products, financial coverage and just plain recognition we need. Together, we can bring about needed changes.

Comments

  • althea
    althea Member Posts: 1,595
    edited November 2008

    Y'all are awesome!  The new website looks great.  You're so ambitious. 

    I've been lucky so far with lymphedema.  I do things that are on the 'shouldn't do' list and then hope and pray I don't have le for life when I get occasional swelling. 

    I know you have a lot of pages to fill.  I do two things which I hope reduce my risk of developing LE.  I got a rebounder because I've read that even gentle jumping on it will stimulate the lymph system, and I hope I'm not misguided in hoping it will help keep LE at bay.  I also practice a thing called abyanga, which I learned from a Deepak Chopra book.  It's an ayurvedic practice of massaging yourself from head to toe with sesame oil prior to bathing.  I have a number of reasons for liking it, one of them is also my hope that it stimulates the lymph system, thus reducing my risk of LE.  I know I'd like to see this info addressed on your site.  Hopefully, it would be of interest to others also.  ...as if you need more things to do.  Great job on the website

  • OneBadBoob
    OneBadBoob Member Posts: 1,386
    edited November 2008

    We are happy you like the site!

    Althea, I have added a page to talk about Abyanga under alternative treatments. http://www.stepup-speakout.org/abyanga.htm    Would you like to write the page for us and tell us all about it?  We would truly appreciate it!

    We have added a "printer friendly" link to the  

    WHAT WE NEED OUR DOCTORS AND NURSES TO DO AND KNOW ABOUT LYMPHEDEMA

    page that we can print out and take with us to give us some "ammunition" to advocate for ourselves if our doctors or health care providers argue with us.

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