Happy Lymphedema Awareness Day!
Today is a day for us to join together and use our voices not only to spread awareness about lymphedema, but to celebrate our amazing community. I am constantly in awe of the lymphie spirit, which is so persistent and positive in the face of something that can, at times, feel so hopeless. It’s true that there is no cure for lymphedema, but there is hope through spreading awareness—and that’s what today is all about!
Established by the National Lymphedema Network in 1994, Lymphedema Awareness Day is specially designated to honor lymphedema patients and our health care providers. It’s also a day for us to raise our voices and let the world know that we’re here and that we deserve treatment, insurance coverage, and support for this condition.
Lymphedema affects millions of people worldwide and can be caused by injury, trauma, or congenital defects in the lymphatic system. Despite the numbers, lymphedema goes largely unrecognized, especially by doctors and insurance companies. Oftentimes a patient can remain undiagnosed and untreated for years (like I did!).
We’re lucky to have the illustrious Kathy Bates as a spokesperson for LE&RN, because she brings much-needed visibility to lymphedema and our need for research and education.
On February 20th, Bates made an appearance on the show The Doctors , where she openly discussed the lymphedema she developed after a double mastectomy for breast and ovarian cancer: “Doctors focus on the cancer, and they don’t really talk about lymphedema,” she said.
Bates also talked about why she became the spokesperson for LE&RN: “I decided to be their spokesperson because I learned that more than 10 million people suffer with this – more than muscular dystrophy, ALS, multiple sclerosis, Parkinson’s disease, and AIDS combined,” she said. “My jaw dropped. The strange thing is that many celebrities are suffering with this, but nobody wants to talk about it.”
Well, Kathy’s talking, and I couldn’t be more thrilled. We’re incredibly lucky to have her! Watch her full interview below:
Even though we have a celebrity face attached to our disease, our work isn’t done. There are lots of things we can do to spread awareness and work towards better care for lymphedema patients, from sharing informational articles and videos on social media to sharing our own stories about our experiences living with lymphedema. A lot of the time people just don’t know what lymphedema is, but once you start the dialogue, they want to know more and really try to understand it!
Another awesome and proactive way to help is by supporting the Lymphedema Treatment Act, a federal bill that aims to improve insurance coverage for lymphedema patients. Untreated or under-treated lymphedema becomes progressive, leading to increased morbidity, placing a costly burden on patients and the healthcare system. We need insurance coverage so that lymphedema patients have a chance to manage their disease without risking further disability and complications. The LTA intends to do this by changing Medicare law, which would hopefully set a standard for Medicaid and private insurance to follow suit.
This is so incredibly important to the millions of men, women, and children living with lymphedema because it would make treatment more affordable and accessible, thus improving our overall quality of life and health!
The LTA’s website has a quick and easy submission form available for you to send a letter to your members of Congress in hopes of getting this legislation to pass. You can also contact your Representative through Twitter or Facebook—here are some sample messages along with a list of the social media accounts of members of Congress. Please take the time to reach out to your Representatives, and maybe get some friends and family to do so, too. The LTA’s progress—and the progress of lymphies—depends on our involvement!
Visit www.lymphedematreatmentact.org for more information on supporting the Lymphedema Treatment Act, and watch the video below to learn more about their mission.
Have a wonderful Lymphedema Awareness Day, and remember to Stay Elevated!
Great post Alexa!
Happy Lymphedema Awareness Day!
Anyone able, please come out and walk at the Second Annual Lymphedema Awareness Walk Mar 28th in NJ.
Peapod Purse is a non-profit where all proceeds go directly to patients!
Sign up or Sponsor at: http://www.elymphedema.org
Thank you for your great Journalism Alexa!
Yours in Health,
Tracey Podolsky, MPT, LANA
http://www.wyattrehab.com
Thanks for the info, Tracey! Sounds like an awesome event with a great cause :)
Be well xx
Thank you so much for this post! Today is also Lymphedema Awareness Day across Canada. Though we have publicly funded health care, it only covers treatment of lymphedema if you develop it due to a medical procedure (surgery, chemo/radiation, biopsy, etc.). Even private medical insurance only covers very select treatment options at this time. Here’s to hoping this message reaches more people!
Hi, Rheagan,
Thanks for your comment! I’m so sorry to hear about Canadian coverage (or lack thereof) – especially if you have primary lymphedema! Geez… It’s amazing that, despite being such a widespread condition, there is so little recognition and support. Are there lymphedema advocacy groups in Canada that are working towards changing that? Anyway, you’re right – here’s to hoping! In the meantime, all we can do is continue spreading awareness and keep the dialogue going.
Be well! xx
Things are only slightly better in the UK. It’s such a battle.
There are advocacy groups that are working towards this, but they are still relatively new in some provinces. They have made great strides with care/coverage for secondary lymphedema patients. We can only hope that coverage for primary is not far behind!
I posted a comment the last time and asked a question. I’m still awaiting a reply. It was about night-time compression garments. I hadn’t heard of these before and requested some further information.
Hi, Mariette,
If you check your original comment, both I and Dawn, an RN, replied to your question. You can find it here: http://lymphalexa.com/2015/02/23/time-for-a-tune-up/#comments
Hope that helps!
Thanks very much. I’ll check out that link.
Thing are only slightly better in the UK. It’s still such a battle and a bit of a postcode lottery.
Wow! I didn’t know there was a National Lymphedema Day AND I had no idea so many people were affected by Lymphedema. I have Primary Lymphedema, it showed up when I was a child. Since the beginning, I have been embarrassed by my condition and have tried to understand it as well as hide it. It is only as an adult, and almost twenty years later, that I have learned how to LIVE with and manage my Lymphedema. I still get embarrassed and frustrated by my condition but each day it gets a little better. Thank you for this blog, as you have inspired and motivated me so much, but most importantly you allowed me to realize that I am not alone on this journey. Thank you.
Reblogged this on My Lymph Node Transplant and commented:
Joining together to build awareness of Lymphoedema. Thanks for this post that brings together those giving Lymphoedema a voice.
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