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Rising Stars: Meet Amy Rivera

Today we’d like to introduce you to Amy Rivera.

Hi Amy, can you start by introducing yourself? We’d love to learn more about how you got to where you are today?
I was born with an incurable disorder called lymphedema that left me immensely disfigured. My right leg was 200% bigger than my left leg. I lived feeling alone for a long time. Through lifelong adversity with my disability, I developed an activist mindset as I feverishly fought to better my quality of life through medicine, nutrition, fitness, and faith. Against all odds, my journey led me to overcome the worst known severity of lymphedema, and I now manage it with minimal maintenance. I left the corporate medical world to pursue my calling to be a voice for those with disabilities and live a philanthropic life.

By facing adversity to the highest level of degree with a rare disease, I understand what it was like to be alone. I created a community of laughter, life, and education as we discover how to awaken our inner resilience and take authority over our own lives. Together, we can live, laugh and learn how to heal.

I created the first of its kind community through my grassroots nonprofit called Ninjas Fighting Lymphedema Foundation. We started the foundation in 2017, helping seven patients. Today, we are global and have helped over 300 patients. I 10x the foundation in three years and plan on growing.

The first of three books will be released on August 2nd – Drop The Skirt – How My Disability Became My Superpower.

Alright, so let’s dig a little deeper into the story – has it been an easy path overall and if not, what were the challenges you’ve had to overcome?
Oh, how I wish it was. I had to fight my corporate job to cover my last surgery for my right leg. In the middle of this fight, I couldn’t return back to work due to my health and they were refusing to pay for it. I had to fight the insurance company for two years before I won my appeals for the surgery. I went to D.C. with the Lymphedema Treatment Act and shared my frustrations with Senators and Congressmen who told me “insurance was a privilege, not a right.”

I fired several doctors due to their ignorance. All they wanted to do was give me a water pill and say this was the best life was going to be for me. I was also told I would be in a wheelchair by the time I was 35. I REFUSED THAT.

I couldn’t get funding because of how rare and new the organization was. Previous co-workers were emailing Great Nonprofits and saying we were a joke.

My family turned their back on me because I left a high-paying position to pursue my health and passion.

I had two previous surgeries before the last one in 2018 that failed and I didn’t know if I could mentally handle another failed procedure.

I took all the negative and turned it into a 21-day wellness challenge, ensuring others will not endure the pain that I did with lymphedema.

Can you tell our readers more about what you do and what you think sets you apart from others?
I specialize in Lymphatic Health and Lymphedema. I’m an author, speaker, and most importantly a mom of a daughter who has the same disease. Unlike other founders or executive directors, I’m reachable for those I serve. I work with the patients through the challenges. I coach them through the difficult times and help attain resources through our foundation.

I have a unique perspective when it comes to running a nonprofit for a rare disease. I’m the patient, founder, and volunteer. I was alone for nearly 30 years thinking I was the only one in the world with this disease. When I found out there are millions of us, I knew I had to change the direction of this disease. Everyone has a lymphatic system and I took it upon myself to educate the world through social media which has landed me in a few interesting places such as in California with Kathy Bates and Billy Bob Thorton.

At the end of the day, I’m just Amy with lymphedema and that’s what sets me apart from others – I haven’t forgotten where I started or my why.

If we knew you growing up, how would we have described you?
I was bullied as a child. I was bullied so much that I entered a pageant in hopes of winning so people would stop calling me “the girl with the big leg.” I ended up winning the Miss Junior America Hostess crown, to my surprise. However, my plan backfired on me. I’m now known as the “Beauty Queen with the Big Leg.”

Needless to say, I was somewhat of a hermit growing up.

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Image Credits

Alison Hillman -BTP by Alison Hillman, Adam Hopkins – Modern Dojo.

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