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BlogHer Susan Niebur of Toddler Planet was speaking with her lymphedema therapist during a session to reduce the swelling in her arms post-mastectomy when she learned that many cancer survivors cannot afford the compression sleeves worn to deal with the swelling brought on by lymphatic fluid.
Susan thought, "Can't afford lymphedema sleeves? Well of course that's true, isn't it, as they cost $100 and up for each arm, and it's important to have two sets - one to wash, and one to wear. I started rolling solutions around in my brain."
And out of adversity a great advocacy project was born. Creating a union between a foundation and a compression sleeve company, Susan is working to bring these sleeves to cancer survivors who can't afford the cost. And she is opening up this project to all of us -- and here is what you can do to help:
- Put it on Twitter and Facebook or blog about the project.
- Donate your connections, money, or time by leaving a comment on the post stating how you can help.
- Connect those in need with the project so they can receive these much needed sleeves.
See, simple.
I spoke with Susan about her new project on Wednesday:
So many people don't realize the on-going side effects from cancer and surgery. What is lymphedema and how does it affect your day-to-day world?
Three years ago, I had chemotherapy, radiation, and a double mastectomy to fight inflammatory breast cancer. Like many of us, I assumed that after that treatment, I'd be fine. Or at least after recovery, I'd be fine. I was surprised to learn that the act of having a mastectomy, the removal of a breast, also typically includes the removal of one or all of the lymph nodes under that arm. Now these lymph nodes normally act to remove waste fluid and proteins from the tissue in the arm, wrist, and hand. When the nodes are removed, the waste fluid isn't removed. I quickly learned that every time I exercised, cooked, or went outside in warm weather, my arm would swell, up to an inch in diameter. They call this "congestion" in the arm, and it feels about as great as congestion in your sinuses. And I don't know about everyone, but it makes me crabby!
Because of lymphedema, I limited myself to indoor activity. I stopped going to playgroups at the park, and I turned down the opportunity to coach my kids in preschool soccer. In fact, I pulled my kids from soccer entirely last summer, and we all missed it.
What is the role of lymphedema sleeves?
Compression sleeves play an important part in the treatment of lymphedema, whether it is a side effect of treatment for breast cancer or a stand-alone disease. Sleeves are made of knit, latex, and/or silicone fabrics that stretch as a person moves, allowing them to be worn all day, but they apply enough pressure that the arm does not swell as quickly, allowing people to be outside for longer periods, to do strengthening exercises, and to cook on or near a hot stove (but don't tell my husband that last part, okay?).
And the need for lymphedema sleeves remains with the person forever?
Yes. Sleeves typically cost about $100 each and have a typical lifespan of about six months. Each patient needs two sets (and this is important) because the garments need to be washed after each wearing to maintain the graduated compression in the fabric. Patients also need to do manual lymphedema therapy each day and/or see a professional for reduction of the swelling, but the sleeves are an essential part of therapy, so that the progress isn't lost the moment a patient steps outside.
The two places you're working with to bring these sleeves to people in need are the foundation Crickett's Answer, and the company, LympheDIVAs. Can you tell people a little bit about this organization and company?
Crickett’s Answer is a 501(c)3 nonprofit organization founded in memory of Crickett Julius. Crickett survived breast cancer only four months after her diagnosis at 39, but her mother and cousin are dedicated to
