For Whymommy: Help for cancer survivors needing lymphedema sleeves

I met Susan Niebur for the first time at BlogHer'09 in Chicago, but I already knew who she was - blogger, mom, planetary scientist, and cancer survivor. When Susan was diagnosed with inflammatory breast cancer (IBC) - the least common and most deadly form of the disease - in 2007, fellow bloggers rallied around, forming Team Whymommy to support her in her battle against it. She won...that time. She had a recurrence of the cancer in 2010, and just last week, she learned that it was back once more. But she's prepared to fight on, and Team Whymommy will be backing her all the way, again.

When I first met Susan, it was hard not to notice the thick wrapping around her arm. It was a compression sleeve that she wore to control lymphedema, a swelling in the arms that can be a side effect of mastectomy when lymph nodes are removed along with the breast. I saw her again at BlogHer'10 in New York City, and she'd traded the bandage-like wrapping for lymphedema sleeves, which perform the same medically-necessary function, but do it in a more elegant manner.

Cancer has made Susan a spokesperson and advocate for awareness of IBC, cancer survivors, and young women and mothers with cancer. She's also aware that some breast-cancer survivors may be forgoing the supplies they need to control lymphedema - the compression sleeves, gauntlets, and gloves are costly and rarely covered by insurance - and is sharing news about a project that can help.

Lat fall, Susan inspired me to join the Army of Women as a possible breast-cancer research volunteer. When she invited other bloggers to help spread the word about this project, she inspired me again.

The following was originally posted at Toddler Planet.

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.

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 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.

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.