Strength Isn’t Just Physical
By: Abby Svoboda
High school is tough. There’s pressure to figure out your future and fit in. As I personally learned, most people feel self-conscious. When I was in high school, I became extremely self-conscious of the way I walked, and it took years to learn why and to accept it.
I joined the tennis team and started to enjoy running too. I began running regularly, eager to get a few miles in before or after school. During this time, I began experiencing shoulder, back and hip pain that my doctor wrote off as growing pains. I figured I hadn’t been working hard enough and pushed myself to do better.
A year later, my pain was increasing. I had become a significantly slower runner, and the way I walked started to change. People asked if I’d hurt my knee or ankle and friends harmlessly teased me. It became obvious that this was not just growing pain and during my sophomore year, I was diagnosed with a type of muscular dystrophy called Facioscapulohumeral Dystrophy (FSHD).
Knowing the cause of my pain and weakness was a relief, but my diagnosis presented new challenges. There were no treatments for FSHD on the horizon and it was a progressive disease. I was told things would get harder, and they did. But I was incredibly fortunate to have wonderful parents who did anything to help me, along with a strong support system of family and friends.
My support system helped me stay optimistic as I endured the physical and emotional challenges of growing weaker. I had many hard days that often made it difficult to stay positive. Progress in neuromuscular disease research and treatments kept me hopeful.
In 2019, I began participating in a clinical trial aimed at stopping the expression of the gene that causes FSHD. The trial was not a silver bullet, and it has not dramatically changed my condition. However, it is an incredible step in the right direction. Until an effective treatment for FSHD is found, I continue using the tools available to me to manage it and live a happy life filled with loving family and friends, a fulfilling career, fun hobbies and big dreams.
I often wonder how life would have unfolded without this curveball, and I would be lying if I said I didn’t often wish it was not a part of my life. But while this part of my life is hard and uncertain, it has shaped me into the person I was meant to be. My own limitations have helped me become more patient and understanding with others, and the occasional ignorant comment has shaped me into a strong self-advocate. Most importantly, FSHD has shown me how resilient I am, and that strength is not always physical.
Abby Svoboda, pictured above with her fiancé, Michal, is a communications professional who is passionate about improving accessibility and inclusion for people with disabilities. She lives in Chicago and enjoys biking, visiting new restaurants and spending time with her friends and family.
Finding resources & support
Being diagnosed with muscular dystrophy can be overwhelming for children and their families. Your doctors and healthcare team are there to support you and your child. There are many organizations and support groups for muscular dystrophy. Supportive care extends the life of people with muscular dystrophy and there is hope for additional treatments in the near future.
Resources: