FACES OF NM: Nicole Riedie’s Story of Resilience and Triumph

Community Spotlights May 14, 2024May 14, 2024

The second installment in our “Faces of NM” series featuring the unique stories of members in our diverse and incredible Nemaline Myopathy community.

Nicole Riedie, a marketing professional from Sherwood, Arkansas, is no stranger to adversity. Diagnosed with Nemaline Myopathy (NM) at a young age, Nicole has faced a lifetime of challenges, yet her story is one of remarkable resilience, unwavering spirit, and a passion for life that shines brightly.

A Lifelong Journey

Nicole’s journey with NM began early. “From an early age, we knew I had some sort of muscular disease, but it was classified as ‘non-specific’ because none of the numerous specialists I visited could figure out what disease I had,” she recounts. The lack of a diagnosis only added to the frustration. “In 3rd grade, I had a biopsy and still nothing,” she says.

Years later, in high school, things came to a head. “I started falling asleep in class, during dinner, etc.,” Nicole remembers. “My pediatrician at the time didn’t listen when I told him something was terribly wrong. He prescribed me caffeine pills and mountain dew!” A visit to the ER and a month in intensive care followed, culminating in a life-changing diagnosis. “That was when Dr. Edgars flew in and officially diagnosed me,” she says.

Finding Hope and Acceptance

Despite the challenges, the diagnosis brought a sense of relief. “Honestly, I felt relief to have a word for this terrible thing I had lived with my whole life,” Nicole says. However, the world at large offered little solace at the time. “Back then the internet barely mentioned it and there weren’t support groups and social media groups to show me I was not alone,” she adds.

Living with Nemaline Myopathy

NM has significantly impacted Nicole’s life. “NM has affected every aspect of my daily life since I was born,” she says. Daily tasks require careful planning, and mobility has become increasingly challenging. “At around age 35 or so, I started struggling to walk independently, thus I began using a walker,” she explains. “Now I’m in my early 40s and had a setback when I broke my hip about 1.5 years ago, so now I use a standing walker at home and a wheelchair when I go out.”

Finding Strength in Adversity

Living with NM has instilled in Nicole a deep well of resilience. “It’s difficult to say NM is rewarding at all because it’s so difficult,” she admits, “however I have to begrudgingly admit that it’s made me very resilient, exceptionally good at overcoming adversity, much more compassionate to others, and an excellent problem-solver.”

A Life of Passion and Purpose

Despite the limitations imposed by NM, Nicole lives a rich and fulfilling life. Her passion for marketing is evident in her successful business, VioletFig Marketing. “I manage social media and digital marketing for small to medium sized businesses,” she says. “I LOVE working and have the most amazing clients!”

Art is another source of joy for Nicole. “I’m also an artist,” she reveals. “I paint abstract paintings and create digital art. I have a Bachelor’s Degree in Fine Arts from Memphis College of Art.”

Staying Active and Engaged

Overcoming the limitations of NM requires creativity and determination. “I’m outgoing and love people, so I interact with them as much as possible,” Nicole says. “My clients are a big source of joy. I also have friends that I text daily. I interact with my parents frequently. I love networking and meeting new people.”

Adapting to Pursue Dreams

When asked about the challenges NM poses to her artistic pursuits, Nicole offers a powerful perspective. “One example of adapting to pursue my interests would be that I used to do large-scale abstract paintings,” she says. “When this became too difficult, I didn’t give up, I just switched to smaller scale pieces. There is always a way to continue doing what you enjoy, you just have to adapt and find a new way.”

Hope for the Future

Nicole’s hope for the future is twofold. “I hope that researchers will remember that adults with NM need help, too,” she emphasizes. “Research is usually focused on children, and yes, I definitely want them to get help, but adults still have dreams and need a cure as well.”

The potential impact of a treatment for NM is profound. “I can’t even imagine a time where I would not have to constantly worry about what happens to me when my parents are gone and my support system isn’t here,” Nicole says. “My entire life would change with a treatment.”

Living Beyond Limitations

Nicole Riedie’s story is a testament to the human spirit’s ability to overcome adversity. Through hard work, determination, and a passion for life, she has carved a path filled with meaning and success. For those newly diagnosed with NM, Nicole offers a beacon of hope and a wealth of hard-won wisdom. “As someone who was born with it and is older now, I have so many things I would tell younger me,” she says:

• “Mindset is everything – you are still capable of greatness and achieving your goals and dreams, even if they have to be modified a bit to fit your needs.”
• “Use the mobility devices and anything else you can get your hands on to help yourself. Young me always thought of those things as giving in or being weak, but using them is not weak, it’s smart.”
• “Get physical therapy and occupational therapy, as much as you can. It is life changing.”
• “Hang in there. Things will change for you and become harder. It’s scary, but there is always something available to help you adapt. Adaptability needs to be your new superpower.”
• “No matter what, you are going to be ok. You can have a great life.”

Her message is powerful: believe in yourself, embrace adaptation, and never give up on your dreams.