Lymphedema Sleeves: Real Help for Breast Cancer Survivors

Susan Niebur, speaking at BlogHer '10.

Of the many ways my life is richer after meeting Susan from Toddler Planet, one of them is what she has taught and continues to teach me about true advocacy, particularly in the area of breast cancer issues.   Her latest advocacy issue:  the need for access to affordable lymphedema sleeves.

I learned about Susan’s struggles with inflammatory breast cancer after meeting her online a few years ago, met her in person between recurrences, and spent an evening with her at an event in March 2010 which was unfortunately marred by searing back pain that ended up being the foreboding precursor to yet another recurrence of this vicious disease.  Susan is far, far, far more than a breast cancer fighter, she’s an astrophysicist, a mother to two children, a writer, and an all-around force to be reckoned with.  She has an infectious smile and an ability to get people swept up into anything she’s working on, partially due to force of personality and partially due to the fact that she’s always working on something very interesting and worthwhile.  Susan’s lazy days make my whirlwind days feel like I’m standing still.

So it’s somehow fitting that in the same week that Susan learned that she is facing (and fighting) her fourth recurrence of cancer, she is rallying her friends to get the word out about two organizations helping women get a valuable resource to minimize the effects of post-mastectomy swelling, lymphedema sleeves and gauntlets  In addition to reading Susan’s post which I am cross-posting with her permission, I urge you to read this interview of  Susan which gives even more insight as to why these garments (and owning multiple sets) are important. 

Cross-posted from TodderPlanet:

Can’t Afford Lymphedema Sleeves?

Are you or do you know a breast cancer survivor?  Please read today’s post and pass it on. If you can’t afford to purchase a lymphedema sleeve, gauntlet, and/or glove, and you can’t manage your post-mastectomy swelling, Crickett’s Answer and LympheDIVAs want to help.

Today, I am pleased to announce a NEW opportunity for breast cancer survivors who have had a mastectomy and/or axillary dissection of the lymph nodes due to breast cancer and have swelling of one or both arms but cannot afford the $200-$500+ cost for two sets of the compression sleeves and gauntlets that survivors with lymphedema must wear every day to keep the swelling in check. 

Although lymphedema sleeves are medically necessary, they are not covered by Medicare OR most insurance plans under current law, and thousands of survivors go without the sleeves, needlessly suffering congestion, swelling, and pain that interferes with their normal activities.

Crickett’s Answer, a 501(c)3 nonprofit organization founded in memory of Crickett Julius, has just joined forces with LympheDIVAs to help other breast cancer survivors who fight not just the beast that is breast cancer but alsothe fallout of side effects that includes lymphedema, which may limit survivors’ activities.  By working together, they are now able to provide needed lymphedema sleeves and gauntlets to women who need them but cannot afford them out-of-pocket or convince their insurance companies to pay for them.  They do this in honor and memory of their loved ones.

Crickett JuliusCrickett Julius survived breast cancer only four months, but her mother and cousin are dedicated to helping other women enjoy their life post-diagnosis through Crickett’s Answer, a 501(c)3 organization that provides wigs, mastectomy products, oncology/mastectomy/ lymphedema massage, facials, and other pampering services as a way to help women feel feminine and beautiful after losing their hair and/or breasts.

Rachel TroxellLympheDIVAs was founded by Rachel Troxell and Robin Miller, friends and breast cancer survivors who wanted to create a more elegant and comfortable compression sleeve.  Rachel continued to build the company during her later recurrence.  Even though she died two years ago, at the age of 37, her father, mother, and brother continue to grow the company in her honor and in the hope that LympheDIVAs’ compression apparel will continue to inspire breast cancer survivors everywhere to feel as beautiful, strong, and confident as Rachel was.

To ask for help, please download and complete the forms at Crickett’s Answer, writing in “lymphedema sleeve and gauntlet” on page 2 of the application. 

To help someone else, please copy and paste this post on your blog or email it to a friend (or your local cancer center!).

To donate, go here

To help change the law so that this medical garment is covered by cancer survivors’ insurance, stay tuned for more about the Lymphedema Treatment Act when it is reintroduced in the 2011 Congress.

Because of these women, these three thirty-something women who didn’t ask to get breast cancer, and the men and women who love them, there is now help for women who can’t afford lymphedema sleeves, a medically necessary garment not typically covered by insurance.  Their legacy lives on.

Note: Cancer patients who are members of the National Lymphedema Network and who are treated by an NLN therapist can also apply to the NLN garment fund, set up in honor of Marilyn Westerbrook

<end cross-post>

On a more personal note, I ask for continued prayers for Susan.  She has a treatment plan and she’s had a remarkable track record for kicking cancer to the curb.  I’d like to see her do it again.

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  1. Anne jackson says:

    You go girl!!!!

  2. anita antoniak says:

    I am unable to purchase a lymphedema sleeve due to not having the finances to do so – is there help somewhere?


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