Philadelphia woman with rare disease educates through YouTube

Philadelphia woman with rare disease educates through her YouTube channel
Viola Dwyer and her husband, Dan.

Philadelphia resident Viola Dwyer is an HR professional and co-creator of the YouTube channel, The Ginchiest and website Viola is helping generate awareness about her personal battle with spinal muscular atrophy.

This is her story.

By Viola Dwyer

It’s an odd feeling to realize that you’re a rarity.

I was born with a neuromuscular condition called Spinal Muscular Atrophy (SMA) that affects 1 in 10,000 live births. The disease is genetic and causes certain motor neurons central to proper muscle function to die. There are various ‘types’ of this disease, from Type I showing the most severe symptoms to Type III the least severe symptoms. I have Type II and doctors consider me a ‘strong Type II’.

As a baby I never walked but boy did I crawl and as child I loved to wheel about the neighborhood and play with friends in my bright red manual wheelchair. Today I still have a lot of the arm function I grew up with but lost a lot of my leg movement and now use a power wheelchair to get around. All I know is that I consider myself fortunate to have the function that I do have. Statistically speaking, however, my life experience isn’t shared with many people alive today.

Rare Disease and Unanswered Questions

When I was born in Philadelphia in 1980 my parents—and the medical community–did not know what my disease was. Forty-one years later, I’m extremely grateful to not only be alive but also to understand on a genetic level what this disease is and to have treatment options. Since starting a revolutionary drug called Evrysdi (Risdiplam) I get to continue living and not be beset with the worry of further weakening. With over 7,000 rare diseases according to the National Organization for Rare Disorders (NORD) I’m acutely aware that there are too many people that still have no treatment. Each February 28 the world brings this issue to light on Rare Disease Day where people share their experiences living with a rare disease.

Some may think that I was dealt an unlucky hand in life, but I won the lottery when it came to the parents I was born into. My mother and father never wavered in their support and belief in me. They encouraged me to pursue my education and cared for me while I paved a way for myself. When I applied for college, I chose some of the most prestigious schools in the country and even I doubted my chances, but they never did. They had a faith in me that, as an adult, I recognize was a true gift. It later instilled a confidence in my capabilities that, for many, can take a lifetime to build.

Viola Dwyer discusses the rare disease spinal muscular atrophy.

Never Giving Up Pays Off

I ended up earning a spot at Johns Hopkins University, where I studied International Relations and Entrepreneurship. I studied abroad in Seville, Spain during the Fall semester of my senior year. After graduation, I pursued a career in investment management. Being new to the corporate world I quickly caught on that people weren’t as open minded as my parents were when it came to people with disabilities. I encountered first-hand discrimination and had to manage misperceptions about what I could accomplish. After working in financial services for nearly ten years, I decided to again further my education. Several years later, I earned an MBA from the Fuqua School of Business at Duke University. It was a wonderful time in my life when I met people from all over the world. In the process, I traveled to exotic countries to learn their ways of doing business.

Meeting My Soulmate and a Tragic Loss

When I graduated in 2011 my parents were already in their seventies and they each had growing health concerns. My father died in 2015 and his death hit me hard.  I couldn’t imagine how I could manage without one of my biggest supporters, but he had already given me the strength I needed to keep going. I also was in the midst of falling in love with my future husband, Dan Dwyer. Dan too is a rarity—struck at the age of nine by a motorcyclist he beat the odds and survived that near fatal accident and now lives with a Traumatic Brain Injury (TBI).

My father got to know him as my boyfriend, but he didn’t live to see us get married. As two people who intimately understand the disability experience, Dan and I share a rare and deep connection. We married in July 2016. In October 2020, we decided to start a YouTube channel called ‘The Ginchiest.’ The goal of this is to dispel the stigma that disability still has all over the world. Although this life is rare and can be challenging it has given me an unexpected wisdom and joy that makes it worthwhile and extremely valuable.

Viola Dwyer

Co-Creator of vlog, The Ginchiest

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