Blind swimmer Tucker Dupree’s life-altering genetic diagnosis

December 1, 2019

Growing up, I could have never predicted I would lose my vision. I was an active and determined kid who worked hard in school and sports. The swim coach at my high school convinced me to pick up swimming when my sport of choice, soccer, was in off-season. Although I didn’t naturally excel at swimming, I began practicing non-stop with kids that were years younger than me and later earned a spot on the team. By senior year, I was named captain of my team and was recruited by several universities for swimming, a goal I had worked towards for years. Just when I felt like I had the next few years of my life figured out, everything changed.

One day in October 2006, I woke up seeing stars in my left eye. I thought it could just be my contact lenses or maybe low blood sugar, but my clear vision never returned and instead continued to worsen. I went to an optometrist that day which kicked off months of testing and seeing specialists, but I was still left with no real leads.

I couldn’t believe this simple test was finally able to equip me with a diagnosis. I was at the point of exhaustion when I learned the actual name of my disease and although the memory of my doctor explaining leber hereditary optic neuropathy (LHON) and what I could expect to experience was awful, it was the first time in months that I left a medical appointment feeling hopeful. By receiving an exact genetic diagnosis, I finally was able to face the disease that I was and would be living with and what that meant for my vision. I needed that information to really move forward with my life and learn how to be successful despite my condition.

As my vision continued to deteriorate in the following months, pieces of my independence started to fade away. But I knew the right attitude would help me reach my goals and achieve great things. And it did. I attended a rehab facility for people with vision loss and met Lex Gillette, a blind track athlete. Gillette had competed in the 2004 Paralympic Games and encouraged me to try swimming at the Paralympic level. In the summer of 2007, I swam in five Paralympic qualifying races and broke five American records. I was the fastest blind swimmer in the U.S. in 25 years.

At 19, I qualified for the 2008 Paralympic team and went on to compete in Beijing. I later won a silver and two bronze medals in London in 2012. Four years later, I won another bronze medal for Team USA at the 2016 Rio Paralympics. After 12 years on Team USA, I retired from swimming and graduated college to focus on my next chapter.

A lot of people ask me what advice I have for others living with an inherited retinal disease (IRD) or with a disability. I always emphasize that anyone can perform at their personal highest level. It’s important to remember that we are people first. We can’t let the word “disability” hold us back from reaching for our dreams. I also stress the importance of proactivity, and that includes taking steps to gather as much information about your disease or condition as possible. For people with IRDs like myself, seeking out genetic testing can bring critical information and clarity.

With more than 270 genes known to cause these conditions, the increased access and availability of genetic testing can help people get information to manage an IRD, connect with others in the community or specific advocacy groups, and identify clinical research specific to their genetic mutations.

Today, resources like Eye Want 2 Know provide a robust set of information and resources for patients and their families to understand and access genetic testing. Comprehensive genetic tests like ID YOUR IRD®, which is available for doctors to order for their patients on, can test for hundreds of gene mutations at once.

My journey has led me to become the person that I am today. When I was first diagnosed with LHON, I thought everything that I had worked towards would be lost. But when one door closed, an even bigger one opened. I accomplished so much more being blind than I would have ever dreamed of doing when I had my sight. And I know with resources like Eye Want 2 Know that are available for those living with IRDs today, the lives of people with these inherited diseases can be changed for the better.

If you’re looking to listen to more of Tucker’s journey, check out the Eye Know – Do You? podcast where he delves into the harrowing and empowering moments that shaped his own life.

Tucker Dupree has received fees from Spark Therapeutics.

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