July 2018

The Lymphedema Ninja

Amy Rivera, Founder, Ninjas Fighting Lymphedema Foundation

Anyone who has watched America Ninja Warrior understands the strength of “ninjas ” – and though she hasn’t competed on the show, The Lymphedema Ninja, Amy Rivera, exhibits that strength in all she does. A video of Amy boxing caught our attention, and we wanted to learn more about her and her advocacy efforts. She certainly is “fighting the good fight,” and everyone at Juzo is in her corner. Read her inspirational story and comment on how you’ve kept up the fight against letting lymphedema control your life.

“It is the way you carried her in your womb,” were the tragic words my mother heard because I was born with lymphedema. My entire right side was swollen from my ears to my toes. As I got older the swelling became more localized in my right leg. I walked around for years trying to blend in with the world as I silently searched for answers. How could I be the only person in the world to have a large leg (in my world I was)?

Several years came and went, and yet I was still alone with no answer and as I grew, my leg grew with me. I did everything I could to hide my disease, my poor self-confidence and my loneliness. I became so focused on being “beautiful,” that I went to the extent of entering beauty pageants – “Miss Junior America has lymphedema!” However, after the lights dimmed, my make-up was wiped off and the glamorous dress was back on the hanger, I still had lymphedema, and it had me, too. I soon became distant from others, making excuses about why I couldn’t be a part of social gatherings. I wore long skirts and dresses to hide my leg.

I was “officially” diagnosed with lymphedema in 2013, even though I was born with it in 1981. Getting a diagnosis was the most empowering moment for me. I no longer felt alone. I thought if there was a name for my condition then others must have lymphedema, too! I was soon educated about the disease and was told I would be in a wheelchair and there wasn’t anything I could do about it because there isn’t a cure. Wait a minute, you mean to tell me I went all these years not living and now that I have a chance to live, my life is over? This lit a fire in me that burns still to this day. I soon found myself researching lymphedema. I traded my heels for a pair of boxing gloves. I began training with Art, who happened to have trained with Muhammad Ali – after all, this was the fight for my life!

My fight isn’t confined to the boxing ring. As I fought, I saw a disconnect with patients. I started an online support group called Ninjas Fighting Lymphedema because I didn’t want anyone else feeling alone or hopeless, like I have all these years. As I started to share my lymphedema journey on social media, the Ninjas Fighting Lymphedema group grew and grew. In 2017, I officially launched the Ninjas Fighting Lymphedema Foundation to raise awareness of lymphedema, build a strong sense of community and offer financial assistance to patients in need.

Today, I wear my bandages proud and show the world that you can live a fulfilling life with lymphedema. I LOVE my life and wouldn’t trade it for anything!

I will continue to fight for all of us. If you want to join me, visit nflfonline.org and follow us on Facebook.

LuAnn London Tandy commented on Jul 11, 2018

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Amy is a true warrior and champion for our cause She is so encouraging and inspiring. She’s a beautiful soul, inside and out. We have not met in person yet, but I am still proud to call her my friend. ????