SU-SO--Together we Can Make the Difference in Lymphedema

 

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Welcome to StepUp–SpeakOut (SU-SO)

SU-SO™ Application Pending

Resources, support and advocacy for women and men with breast cancer-related lymphedema

What did you think of when you first heard the word "lymphedema?" Most of us know what lymph nodes are, or at least we've noticed that they can swell when we have an infection. But few of us – and unfortunately, not even all our doctors – realize just how important our lymphatic system is in controlling infection and disease.

Lymphedema is one of the scariest long-term side effects of breast cancer treatment. It can result when some of our lymph nodes are removed or damaged by surgery, radiation, or other routine cancer treatments. Disfiguring, distressing, and often disabling, lymphedema can only be managed and controlled, not cured. All of us who have been treated for breast cancer are at risk for developing this condition, and that risk remains for the rest of our lives. Once we have lymphedema, it's up to us to manage the day-to-day care that's necessary to keep our all-important lymphatic system functioning in the most efficient way possible, continuing to protect our bodies from infection and disease.

But there's hope! New directions in research hold promise for both improved prevention strategies and eventual cure. And while we wait for that bright future, we can join together to encourage one another, improve the quality and availability of lymphedema treatment, and increase lymphedema awareness among healthcare professionals and the public alike.

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, 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 by: 

AND FINALLY, thanks for stopping by. We hope you'll find the information and encouragement you're looking for here, and we welcome your comments and suggestions for ways to make this site even more responsive to the needs of breast cancer veterans everywhere.

Oh – and if you're not a breast cancer survivor? You're welcome, too. Maybe you're a person whose lymphedema was caused by something other than breast cancer, or an interested medical professional, a compression garment maker or bandage supplier, or the loved one of someone who's struggling with lymphedema. We're really grateful for your interest, and we hope you'll join with us in learning about lymphedema and promoting awareness.

STEP OUT – SPEAK OUT:

TOGETHER WE CAN MAKE THE DIFFERENCE!

Please contact us with your comments and suggestions!

 DISCLAIMER:

 

The materials on this World Wide Web site are provided for informational purposes only, do not constitute medical advice, do not necessarily reflect the opinions of any physicians, and are not guaranteed to be correct, complete or up-to-date.  This World Wide Web site is not intended to create a doctor-patient relationship between you and The StepUp-SpeakOut.Org group, and you should not act or rely on any information in this World Wide Web site without seeking the advice of your own physician or healthcare provider. Lymphedema requires appropriate evaluation, treatment and education by a certified lymphedema therapist.

 

The lymphedema resources and information pages on this World Wide Web site and the articles and links to other resources on the internet are provided as citations and aids to help you identify and locate information and other internet resources that may be of interest to you regarding lymphedema, and are not intended to state or imply that the StepUp-SpeakOut.Org group is affiliated or associated with, agrees with or is legally authorized to use any trade name, registered trademark, logo, legal or official seal or copyrighted symbol that may be reflected  in the links.

We do not endorse any specific products, but merely offer publicly available information regarding them.

Frequently Asked Questions Regarding Lymphedema

Page Last Modified 07/26/2014

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 Links to Lymphedema Information

Short Video on Lymphatic System

 Join us at the Breast Cancer.Org Lymphedema Discussion Board

See and download our Essential Knowledge for fitness trainers, Yoga teachers, and Pilates teachers regarding breast cancer related lymphedema

See and download our Handout What-you-should-know-about-lymphedema-and-exercise as a breast cancer survivor

Visit our page on Weightlifting and Lymphedema, Comments on Study published in New England Journal of Medicine and Questions and Answer with Dr. Kathryn Schmitz, Lead Author of study.

 

Controversial Studies on Wearing Compression Garments While Flying

 

Important Information Links to:

Lymphatic and Venous Disorders--Dr. Stanley Rockson of Stamford University

The North American Lymphedema Education Association (NALEA)

It's Member Schools include the following:

 

 

 

 

 

 

 

 

 

 

 

If you would like to use any information from our website for educational purposes, please email us first for permission at StepUp-SpeakOut.