New LE Website--SteupUp-SpeakOut.Org

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OneBadBoob
OneBadBoob Member Posts: 1,386
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment

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.

 

Jane - Dance as if no one is watching!!
Dx 7/7/2007, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-

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Comments

  • Route53
    Route53 Member Posts: 340
    edited November 2008

    Good job.  Although my wife hasn't had lymphedema, the passion behind this issue and your efforts really shows through.

     Route53

    http://route53.wordpress.com 

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  • FLtricia
    FLtricia Member Posts: 140
    edited November 2008

    Most impressive!

    My onc. is very concerned about his patients and lymphedema.  I am warned every visit to be careful of my arm so it doesn't develop.  I will bring him this link for him to pass to patients.

    Thanks for all of your hard work. 

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

    We are happy you like the site!

    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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  • enjoylife
    enjoylife Member Posts: 578
    edited December 2008

    Great site to visit and I am still fighting my arm swelling it happens when its cold when its hot etc and I live in a small town not a good PT at all went to her and she turned my arm colors and no one good to fit the med sleeve was too large the small Jobts is too small so I am without wearing one HELP so I have made up my mind frist of the year I will seek some one who knows anything about the electric pump and see if INS will pay for it and I will get one and when I am in Boston next time see if I can get fitted for a sleeve the right way but that isnt until June 08 ....IT seems like no one knows anything about it and I feel like I am in the dark ages...

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