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Susan and the Sleeves: An incredible story of empathy

January 7th, 2011 by - no comments

Those of us in the space, mom, friend, and cancer community know and love Susan Niebur, an incredibly intelligent astrophysicist, and an amazing and inspiring person. Susan is a cancer survivor. Not quite four years ago she was diagnosed with inflammatory breast cancer, while nursing her baby. Since then, she’s dealt with reoccurrence of different kinds of cancer. This week, after a scan revealed spots on her lungs, she learned it’s cancer, again. She’ll start treatment next week.

What she’s already started is a phenomenal effort to help other breast cancer survivors, “Can’t Afford Lymphedema Sleeves?

Breast cancer survivors who have had a mastectomy and/or axillary dissection of the lymph nodes due to breast cancer typically need special treatment to keep the swelling (and pain) managed. These survivors benefit greatly from compression sleeves and gauntlets, but unfortunately, many can’t 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.

Susan’s post offers some good foundations that offer help — and she asks that we all contribute in any way we can to help these groups provide these crucial things for survivors.

Here is a brief summary:

Crickett JuliusCrickett’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 also the 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 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.

LympheDIVAs 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.

Rachel Troxell

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’task 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.

What will you do to help?

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.

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