Dustin Russell is a 15-year-old freshman in high school who finds joy in sports and loves his friends and family. Dustin is also 1 in 26. This statistic represents that 1 in every 26 individuals will be diagnosed with epilepsy at some point in their lifetime.
Epilepsy can affect a person at any point during their life. 2023 changed Dustin’s life when he began experiencing generalized tonic clonic seizures leading to his diagnosis at 13 years old. This type of seizure causes people to lose consciousness, fall, and stiffen and jerk their muscles. This sudden seizure activity and diagnosis became a major roadblock for Dustin. Going to class and keeping up with subjects like math became more difficult. On top of this, his ability to participate in sports and other physical activities that he has loved for the majority of his life was also impacted. Common experiences he enjoyed doing like swimming and riding amusement park rides became more dangerous for him. But Dustin did not give up and continues to persevere. He stated that, “though 2024 was a crazy year and will affect my whole life, I am blessed to have my friends and family surrounding me 24/7. Throughout my ups and downs these people were always behind me to help me when I needed it the most. I am so grateful and appreciative for another year.”
Dustin shared that he feels he has found ways to be able to overcome his struggles caused by his epilepsy. His determination and hard work have paid off by recently being selected as a team captain for both his baseball and basketball teams. He is also proud to have been seizure free since July of last year! With the help of the right medications, Dustin has been able to control his seizure activity while maintaining an active lifestyle. Looking to the future, Dustin wants to do well in school and pursue a college education. This may involve continuing with his love of sports by playing baseball and basketball as a college athlete.
Since his diagnosis, Dustin has set out to be an advocate for himself and a powerful voice for others with epilepsy. He and his family have taken steps to educate his teachers about how they can support him and help during a seizure. He’s taken to social media, sharing posts with the purpose of “letting others know that having epilepsy doesn’t change who you are, and that there are so many people who are there to help.”
He also decided to get involved with EFNENY at last year’s Walk to END Epilepsy in Saratoga. “Team D-Russ” was created in his honor by parents from his baseball team. The group lead a large fundraising effort and were joined by over 150 “Team D-Russ” teammates during the walk. Together, they won awards for being the top donors and for having the largest team. Dustin told us that he “was so amazed that so many people around me came out to support me from all my different teams and my local community.”
Dustin’s commitment to supporting those with epilepsy made him the perfect candidate to be New York’s Teens Speak Up! representative in March. He took a trip to Washington, D.C., to meet and befriend other teens with epilepsy and learn about how to be a better advocate. Dustin, alongside EFNENY Health Educator, Rachel Yattaw and his mom, Kate, visited Capitol Hill to speak with legislators about issues important to the epilepsy community. Dustin shared that “hearing everyone’s stories empowered me to share my own.” He said that after his experience, “I have more confidence to speak and be myself and embrace my epilepsy.” Dustin now wants to become an ambassador for TSU. He plans to keep up his great work and continue to be a source of education for those around him!
What do you think everyone should know about epilepsy?
“That you are not alone.”
