A WOMAN who lived with a condition that made one of her legs double in size for over three decades has undergone an incredible transformation.
Amy Rivera, 42, had lymphedema, a condition that causes swelling in the body’s tissues – but the condition went undiagnosed for most of her life.
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Her left leg was twice the size of her right one when she was born, something that was blamed on the way her mother “carried her” in the womb.
But after Amy and her family battled for 32 years to get a diagnosis she was finally told she had the condition, which can be caused by blockages, trauma, or missing lymph nodes in the lymphatic system.
At its very worst, the fluid trapped in Amy’s leg weighed 35 pounds and would leak out of her skin.
She said: “My life was becoming unbearable. I didn’t even want to look at my leg in the mirror, when I changed, showered, ever. I hated by body. I hated myself.”
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Amy was extremely embarrassed by it and would hide it with long skirts and dresses, but a conversation with a coworker completely transformed her life.
She said: “I was always bullied by peers, teachers, and strangers. I was called the ‘girl with the elephant leg’.
“I was having a conversation with a coworker one day and she called herself ‘fat’.
“I asked her if she wanted to come over and hang out at the pool one day. She asked me if it was a private or public pool.
“I told her it was a subdivision pool. She then said, ‘fat girls don’t go to public pools’.
“This was years before the body-positive movement, however it broke me to hear her speak of herself this way.
“I felt compelled to show her my leg. I was so good at hiding it that my coworker thought I wore dresses and skirts for religious reasons. This moment saved my life.”
After this life-changing discussion, Amy left her corporate job in 2016 and began to share her journey.
She stopped hiding her leg and became an international best-selling author of the book ‘Drop the Skirt – How My Disability Became My Superpower’, the title of which was inspired by the moment she shared with her coworker.
Amy said: “I wasn’t sure what I was going to call my book until I shared this story with my public speaking coach, who helped me with my first speaking opportunity to share my story, and husband.
I didn’t even want to look at my leg in the mirror, when I changed, showered, ever.
Amy Rivera
“Together, the three of us realised this needed to be the title.”
Amy took part in beauty pageants when she was younger, but she now enjoys competitive bodybuilding.
Having worked out at the gym since she was 15 years old, she learned working out made her body feel good, even though physicians told her movement was bad for her leg.
She said: “Years later, research shows that movement is the very thing that helps improve lymphedema symptoms.
“Even though I was a beauty queen, I felt more like myself in the gym. Anyone who knows my story knows that my dream was to become an athlete.
“I achieved that goal at the age of 40. Even though I competed in a bodybuilding competition, that isn’t the main vehicle for me. I picked this task to see just how strong my mindset was. If I could control my body through my mindset, consistency and selfcare, I knew I could do anything.
“I placed 3rd in my division and 4th overall.”
Since her diagnosis, Amy has undergone three surgeries to treat her lymphedema and is now thriving physically and mentally.
But the journey to get to this point hasn’t been easy.
My family tried to get answers for years. After years of doors being shut in their faces, they just gave up.
Amy Rivera
Amy said: “My family tried to get answers for years. After years of doors being shut in their faces, they just gave up. They were very frustrated.
“Doctors even told my mother it was the way she carried me in the womb, which wasn’t true. You can imagine the guilt she has carried with her all these years because of that.
“It has been difficult to get physicians, insurance companies and the healthcare system to understand this is a serious condition that progressively gets worse and can lead to death in serious cases if left untreated.”
Amy hopes to now be a “voice for her community” despite the cruel comments she faces.
She said: “People have told me I shouldn’t share pictures of my leg because it’s disgusting. Someone even asked me if they could catch it.
“I look at these situations as opportunities to educate others. I was alone for over 30 years. I don’t want anyone else to feel the way I did. I want our community to know they no longer suffer in silence.
“My husband is the one who inspired me to become a leader in the lymphatic community. He believed in me from the beginning.”
Symptoms of lymphedema
- an aching, heavy feeling
- difficulty with movement
- repeated skin infections
- developing hard, tight, or thickened skin
- wart-like growths developing on the skin
- fluid leaking through the skin
- swelling or heaviness in the face, mouth or throat
- problems with swallowing and speech
Source: NHS
In 2022, Amy partnered with a French engineer who created the world’s only single-layered, multi-component bandages for lymphedema.
She regularly speaks to pre-med students, physicians, and therapists about the condition, and she is currently collaborating with some major Universities including Vanderbilt University and the University of Pennsylvania on lymphatic research.
Amy added: “Together, we will win our fight.”
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