My Rheumatoid Arthritis Journey to Wellness and Empowerment

By Amye Leong, MBA, President & CEO, Healthy Motivation

Asian Pacific American Heritage Month has taught me that I am not alone!

I am Asian, a fourth generation Chinese American, and I have rheumatoid arthritis. Arthritis and related diseases affect people of all ages and ethnicities, but we of Asian backgrounds have historically tended to keep our pain and disability to ourselves. After being diagnosed at age 18 and crippled in a wheelchair by age 24, my American, independent side said, “Enough! Time to get serious about finding the best treatments for me.”

Even though the Arthritis Foundation has been helping millions since 1948, it was only in the 1980s that I discovered that I, too, could have a direct say in the care and management of this disease that was eating away my joints.

My volunteer involvement with the Arthritis Foundation in self-help education and advocacy, speaking throughout the country, led to my being named Spokesperson for the Bone and Joint Decade, a United Nations-endorsed initiative in 65 countries, known today as the Global Alliance for Musculoskeletal Health. Through the Global Alliance I had the opportunity to live in Paris, France, for three years, which gave me a unique perspective on arthritis-care differences between nations and continents. Being the only patient in a room of health policy and medical professionals was commonplace then. Thankfully, our early work to show the value of patient engagement proved foundational in newer models of care.

A real standout for me was the high honor of being named a Community Hero to carry the Olympic Torch for the Centennial Olympic Games in 1996. Friends and family came to Hollywood, California, my designated Olympic Torch location, to cheer me on as I “ran” with the sacred Torch!

Today, with over 20 joint replacements, I am still mobile and active. Arthritis will never get me down ever again! A disease that was crippling me ultimately empowered me to speak on behalf of so many others like me. The Arthritis Foundation gave me the opportunities to hone my knowledge about how arthritis affects me, to speak intelligently with medical professionals, work with researchers across the globe, and to impact health policy decision makers nationally and internationally.

That association impacted my wellness so positively that I met the man of my dreams and married Bob in 2015. Now that’s power. Thank you, Arthritis Foundation!

When you speak, we listen. Your voice has the power to help break down barriers to care, accelerate research and inform resources that are relevant to you. Join the Arthritis Foundation Patient Voice Panel to share your perspectives and make a difference in people’s lives, including your own.

 

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