Thursday, January 6, 2011

A rare PSA: lymphedema

You know how every so often I mention my DC Moms blogging group? The women there are amazing and inspiring and filled with great ideas and the savvy to make them happen. This week the DC Moms are rallying around our friend Susan, a three-time breast cancer survivor still in treatment who has found a way along with our friend Sue to support other cancer patients.

Susan wears lymphedema sleeves to keep her arms from swelling with lymphatic fluid, which is a common side effect of breast cancer surgery. She was appalled to find out that many woman in her position don't have lymphedema sleeves because they are not usually covered by insurance and they are expensive. Susan always says that before she got cancer, she thought people with cancer had chemo, and it sucked, but that then they could resume their lives normally. It's not that simple.

Sue is on the left, and Susan in her gorgeous LympheDIVA sleeves is on the right.

Susan has shown me incredible kindesses that I won't forget. Just this week she found out that her cancer may have further metastasized. Susan is the same age as my lovely husband, and her sons are nearly the same age as my beautiful daughters. There isn't enough we can do to support Susan, but what she has asked of us is to help spread the word on her new cause to get lymphedema sleeves on the arms of women who need them. This, I can do.

The following is cross-posted from a group blog that Susan founded, Mothers with Cancer.

Need Help Buying Lymphedema Sleeves?

January 5, 2011

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 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 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 Troxell
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


I promise more of my usual lighthearted drivel soon, but every so often, it's important to be serious. In honor of Susan, go find someone you can help with this information. Pin It