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Lymphedema Day 2019: Looking at the many faces of advocacy

In honor of Lymphedema Awareness Day, we'll be spending the month of March getting to know some of the people behind global lymphedema advocacy efforts.

Happy Lymphedema Day, everybody!

Did you know our special day has a 25-year history? The National Lymphedema Network was founded on March 6, 1988, followed by the establishment of the first Lymphedema Awareness Day in 1994.

In 2016, March 6th was further cemented to the cause as the Lymphatic Education & Research Network’s World Lymphedema Day was launched along with its accompanying petition for lymphatic diseases to be recognized as a global health challenge initiative by the World Health Organization.

So much has changed in the twenty-five years since the first Lymphedema Awareness Day, and yet we still have so far to go.

Something I love to say here on the blog is that we are our own best advocates. As patients living with an often-ignored and misunderstood condition, we’re in a unique position to tell our story to the world in our own words: we’ve got a blank page to fill with our experiences of what it’s like to live with lymphedema; our need for more timely diagnoses and access to effective treatments; our demand for more research; our hopes for a cure.

This our day, yes. But it is always our time.

What does advocacy look like?

Better awareness doesn’t just happen, though: we need to advocate for it. But what does advocacy look like, really?

Advocacy looks like a ballerina-turned-lobbyist leading the fight for better insurance coverage. It looks like an elementary-schooler with a penchant for purple and public speaking, and an octogenarian who hopes no one else has to wait until their sixties for a diagnosis like he did.

Advocacy is visual, like a curly-haired cancer survivor posting photos in her compression bandages on Instagram, and it’s informative, like a surgical practice using social media to educate its patients on their treatment options.

Advocacy is community-minded, like a woman using Facebook to create online communities where people can bond over food, fitness, and inspiration not in spite of, but alongside their lymphedema. Advocacy is a recently-appointed executive director bringing fresh eyes and earnest passion to her new role at a national lymphedema organization.

Advocacy is giving people with lymphedema the luxury of having options when it comes to something as seemingly innocuous as a comfortable-yet-stylish pair of shoes and socks.

Advocacy looks like us. It looks like you.

There’s no one way to “do” advocacy work. We all do it, just by virtue of existing as people with lymphedema. Every time we step outside with our compression visible, every time we answer a stranger’s question, we are affirming our existence. And that’s a start.

A spotlight on our advocates

Throughout the month of March, I’ll be showcasing different types of advocacy through a series of interviews with patient advocates and organizations who push for greater visibility of lymphedema patients around the globe.

Some of them you may know, some you may not, but the ripples of their work are felt by all of us.

Stay tuned (and stay elevated!) throughout March as we celebrate some of these special people in our lymphie lives. To make sure you don’t miss a post, please subscribe to the blog via email or follow along on Facebook or Twitter. It all kicks off tomorrow!

lymphie-life-world-lymphedema-day-2019

How do you practice lymphedema advocacy in your everyday life?

3 comments on “Lymphedema Day 2019: Looking at the many faces of advocacy

  1. Advocacy is the determined patient who files an insurance or Medicare claim every time a compression bandage or garment is denied and continues to file appeals to the highest levels or until the denial is reversed.

    Advocacy is the rocket scientist who has established an information site http://www.lymphactivist.org for lymphedema patients and therapists with late research, reviews, and forward looking proposals for improvements in lymphedema measurement and treatment, and with up-to-date detailed information on patients’ rights, insurance coverage and appeal procedures.

    Advocacy is the patient who takes the time and energy to receive training to become a translator between physicians and patients to bring the latest medical information to patients and the manifestations of lymphedema to the physicians and to monitor the internet to correct mis-information and unfounded claims.

    Advocacy is the patient and therapist who sit on public and government committees to work for better insurance coverage.

    • Alexa Ercolano

      Yes to all the above! You’re actually mentioned in tomorrow’s post, as the interview subject is someone whom you know. Thank you for all the work you do for the patient community, Robert!

  2. Advocacy is ALSO the wife/partner/family member who stays informed, steps up to assist with LE therapy at home, monitoring results, encouraging healthy lifestyle choices, staying with a treatment plan/schedule, and generally cheering on that dear person in the circle of beloveds who is living with this. Finally, telling others about LE and, being a voice for change – and a positive force for good!! While arm-wrestling with the inevitable health insurance delays (hopefully not the LE arm..LOL) staying current with home care, allows the LE family member not to miss out, or backslide, as we help them stay on track – and manage their condition.

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