Making a Positive Impact

 

In the beginning of my reduction journey in 2014, this Juzo® tie-dye compression garment helped my legs reverse from Stage 1 swelling and led me to finally be able to fit into shoes again in 2015.  I wore my garments so much that I earned the nickname The Tights Lady at my gym back then. It took an entire year, but the circumference of my calf on my worst LE reduced to 14 3/4 inches, or approximately 37.5 centimeters.

Back in the summer of 2017, Juzo® approached me to sponsor shirts for the #MOVETHATLYMPH Challenge Series. Early on they saw and supported the vision I had for The Lymphedema Running & Fitness Club to promote lymphedema & lymphatic health awareness.  It was almost like a sign from my Dad.  He used to pitch softball for his employer’s softball team when I was kid, even though he could not run. I still remember Dad’s jersey and his softball glove. When we closed that meeting, that’s the picture I had in my heart.

Positive Impact

Beyond my own imagination, I did not expect for us to grow and reach so many people with lymphedema from around the world.  Our very own lymphedema league!  A league of our very own.  With our growth, I have had to respond and adapt.  Nobody handed me a manual on how to do this.  This program has been a life altering experience for me personally.

The keyword here is TEAM.  It seems hard to believe that in two short years we have awarded 8 garments for adults, and 6 garments for children as part of the challenge series.  They also donated 2 full sets of short stretch bandages, Juzo® sleeves to a victim of Hurricane Harvey, Juzo Therapy Tape prizes to a primary LE and BC survivor for our kinesiology taping competition, and a roll of SoftCompress® to group members. The team shirts they sponsor also allow opportunities for the fitness group to spread LE awareness.

 

Together We Are Stronger

During Lymphedema Awareness Month, I had the unique honor and privilege to meet with Annerose Zorn, Matriarch and President (and great, great granddaughter of Julius), and her daughter, Petra Zorn, Vice President at the Power Symposium Conference in New Orleans. The theme of the meeting was “Advocates Making a Positive Impact.”  In the same meeting I met many of my fellow advocates whose mission it is to help others thrive with our same disease.

The conference kicked off with a round table meeting of the minds on how we, as patient advocates working hard to make a positive impact, could share our thoughts for collaborations and future projects.  We each told our story.

As I sat with my fellow LE and Lipo-LE advocates and listened in on how the Zorn family early on helped patients from around the world, I was speechless.  You have heard me say before, everyone is fighting a battle we know nothing about.  The Zorn family has made it their mission to help.

You could have heard a pin drop as we listened to the patient story of a child who was a burn victim and walked with a full body cast. Annerose Zorn was so moved by him, she created from scratch, a full body custom garment which allowed him the simple gift most of us take for granted – to play.  This is the heart and soul of Freedom In Motion and What Moves You. This is the backbone of #MoveThatLymph. Fitness should be about all of us having the ability to play.

Breaking Down Barriers

In my personal opinion, these are not just hashtags to toss around.  Real lives are at stake.  I experienced a personal epiphany in that meeting. I know as patients we often get caught up in the pricing and flaws of compression products, but how often do we stop and think about why those said companies got into the business of compression in the first place?  The world is a big, and we all have choices.  They could easily pack it all up and choose to create something else for a different market.  Instead they are taking the road less traveled to break down those garment barriers.

My fellow advocates and I were asked to tell our patient stories to approximately 150 DME company representatives. This was our intro–

“People living with lymphedema or lipedema must overcome constant challenges as part of their daily routine. There are so many incredible ambassadors out there, advocating for themselves and others battling these diseases. Their stories are awe-inspiring and motivating. You’ll get to meet a few of the fierce warriors, breaking down barriers and setting the example for others of how to keep living and moving. Read their stories on the Juzo Steps to Better Health blog.”

For my part, I had the audience repeat after me. “I am making a difference. Compression saves lives.”

 

Advocacy did not stop with patients.  Dr. Melissa Gallagher of Natural Health Resources has a YouTube channel with 159K followers, and she advocates for LE and Lipo-LE.  Check out the link above!

 

Onward

I’m so proud and thankful to be a Juzo® Ambassador and part of the advocate team.  Having had the opportunity to speak up both as a patient and for the Lymphie Strong community as a whole, I could not have asked for anything more.  Power Symposium 2019 was the ultimate patient advocate experience. I am so looking forward to 2020 and beyond.

Stay tuned for our announcements for The Lymphedema Running & Fitness Club and plans for 2020.   This includes collaborations with fellow advocates!

Wishing you great lymphatic health,

Lymphie Strong