At a recent Special Olympics Summer Games, one athlete took center stage to receive a gold medal – something that symbolized much more than winning a sporting event. For Ryan Groves, a 26-year-old from Michigan, the award meant he was confronting a lifelong challenge that started when he was diagnosed with a rare disorder called tuberous sclerosis complex, or TSC, right before his first birthday.
Tuberous sclerosis complex is a genetic disorder that can affect many areas of the body, including the brain, eyes, heart, kidney, skin and lungs and can manifest in drastically different ways from person to person. While some people with TSC may experience kidney and brain tumors, autistic tendencies and facial lesions as a result of the disease, others can have severe cognitive impacts, lung tumors or a dangerous swelling of the brain called hydrocephalus caused by growing brain tumors. Because TSC is a complex disorder, patients like Ryan require a multi-disciplinary team of physicians, which can include a neurologist, nephrologist, urologist, psychiatrist and others who specialize in TSC.
In spite of the challenges of living with TSC, Ryan doesn’t let his diagnosis get in his way. He started participating in the Special Olympics when he was 17 after his family moved to Brighton, Michigan. In May 2013, Ryan competed in the 100- and 400-meter dashes, the high and long jumps, the shot put and the softball throw, for which he won gold, at the Michigan State Special Olympics Summer Games in Mount Pleasant. He previously competed in the national Special Olympics in 2010, where he won two silver medals in track and field.
“Training for the Special Olympics was hard, but it was something I wanted to do,” said Ryan. “I want people with TSC to know that even with the obstacles in your life, you can still do anything you set your mind to.”
Since Ryan’s diagnosis, his parents, Kathy and Bob Groves, have become involved with the Tuberous Sclerosis Alliance. They say the Special Olympics has given their son a healthy outlet and a unique opportunity to become part of a team.
“We are so proud of Ryan,” Kathy Groves said. “He inspires us every day with his determination to never let his diagnosis stand in the way of competing, playing sports and anything else he wants to accomplish.”
Novartis, the TS Alliance and the Special Olympics are working to raise awareness of TSC through Ryan’s inspiring story. Novartis is dedicated to understanding and improving the lives of people with TSC through education and collaboration with the TSC community. Follow Ryan’s journey with the Special Olympics and learn more about TSC on a Tumblr page developed by Novartis by visiting www.tscathletes.tumblr.com.
