| StepUp-SpeakOut.Org Newsletter
Together We Can Make the Diference In Lymphedema
Vol 1
Winter, 2008
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We're still hard at work gathering new information, research, products and coping ideas, but we're eager to share the wealth of resources already available on our site.
At this busy time of year, remember to take care of yourself, wear your sleeve/glove when shopping, cooking, and doing other Holiday preparations.
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Seasonal Tips to Keep Yourself Safe During the Holidays
Even if it's the Holiday season, your lymphedema won't be taking a vacation. Keep your holidays happy and healthy by remembering a few seasonal precautions:
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Don't forget to make time for your MLD, exercise, daily rest and relaxation.
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Drink plenty of water -- that's harder to remember in the cooler weather, but just as important.
- Be lavish with the lotion to keep winter-dry skin from cracking and causing you grief.
- Wear warm, dry hand protection (mittens are better than gloves) to avoid the swelling that can happen in extreme cold.
- Follow the travel guidelines of the NLN for your Holiday jaunts, and arrive swell-free and comfortable.
- At year's end, check the expiration dates on your on-hand antibiotics (oral and topical) and replace them as necessary.
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 New Lymphedema Research being Funded by Avon Foundation
A lymphedema researcher named Mei Fu, PhD, RN, APRN-BC, from New York University, is interested in showing the importance of lymphedema education for both risk reduction and on-going self-management. The idea is that our medical professionals are supposed to take some ownership in educating their patients about their risk and how to manage it. Which of course means the professionals themselves will be learning about lymphedema. Win/win! Here's a report about Mei Fu's newest study, which will be published this month: http://www.nyu.edu/nyutoday/vol/22/issue/98/article/1638
You can help by sending Avon an email thanking them for funding this study and encouraging them to continue to fund studies that help us get the care we need. Of course you may mention you're a lymphedema patient or caregiver, and that getting lymphedema information has been difficult, or whatever else you'd like to point out (briefly, of course!)
Find out more at:
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Clear Communication with Our Health Care Team
Clear and considerate communication with every member of your healthcare team can help them understand your needs, keep you safe and reduce your lymphedema risks in every medical situation.
Use these talking points to add focus to the conversation. Find out more at:
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Finding the Right, Qualified Lymphedema Therapist
Not just anyone can treat lymphedema safely and successfully! Discover ways to assure that you receive the best lymphedema care available.
Learn where to look for a qualified therapist and what you should expect during your treatments. Find out more at:
How to Find a Qualified Lymphedema Therapist
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How Do I Know if my Sleeve and Glove Fit Properly?
 "Should my fingers-tips be turning blue?" Learn what you should expect--and NOT expect--from those new lymphedema garments.
Learn about proper care of garments, fabrics, millimeters of mercury and compression class, circular knit and flat knit, special concerns, what a fitter should do, and more.
Find out more at:
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All About Wrapping and Helpful Tips
"Wrapped wonder," "The Michelin-Man Look," "Mummy dear" - no matter what you call it, compression wrapping is one of the most important tools you have to help you take charge of your life with lymphedema. Find tips here for making it all more manageable, including tips on the difficult task of wrapping fingers with foam made easier using a cotton glove and Velcro. Find out more at:
Tips for Wrapping Arm and Hand
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Chest, Breast and Truncal Lymphedema
With the frequent use of Sentinel Lymph Node Biopsy plus radiation as a treatment for breast cancer, there's growing concern over the rising numbers of patients diagnosed with truncal (breast or chest) lymphedema. Reconstruction with such methods as TRAM or DIEP flap surgeries also raises the risk of abdominal lymphedema. These conditions can be especially difficult to diagnose, treat and control, and resources for comfortable compression are hard to find. Find out more at:
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Lymphedema Medical Emergencies
The most common form of lymphedema-related infection is cellulitis. Here are some signs of cellulitis to keep in mind:
- Warmth or tenderness when you touch your skin
- Fever
- Chills or general achiness
- Pain
- Itching
- New or sudden swelling
- Solid or splotchy areas of redness, or streaking red lines
- Rash
Any symptom of infection needs to be treated as an emergency. Get medical attention immediately -
Find out more at:
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How Can I Cope With All of This?
Having a diagnosis of lymphedema is not fun. But it is not the end of the world either! Here are tips from some of us "Swell Girls and Guys" for managing our daily lives with lymphedema while still enjoying a great quality of life. Find out more at:
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OUR MISSION
As women and men 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 and SPEAK OUT:
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.
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