Inspiration from 17-year-old Special Olympics Athlete With Tuberous Sclerosis Complex

Whitney and her family live in Lebanon, Tennessee. Because of TSC, Whitney has non-cancerous tumors in her brain, kidneys and eye, and developmental delays. No matter. She represents Team Tennessee at the 2014 Special Olympics USA in the bocce event, competing June 16 through 18. Her mom, Sharon, has her own goal in mind — raise awareness about TSC and the need for more education and research.

“When we received the diagnosis in 1997, we were absolutely devastated,” Sharon shares. “We thought we were going to live a life of pain and misery, but as it turns out we have lived a life of abundant blessings.

“I want other parents to know that despite TSC your child can live a very happy and successful life and you can never imagine how much joy they will bring you and everyone that knows them.”

Patients often first in family to get TSC

Early diagnosis is key, says Dr. John Bissler, director of the Tuberous Sclerosis Center of Excellence at University of Tennessee Health Science Center, UT Le Bonheur Pediatric Specialists, LCH. He specializes in pediatric nephrology and tuberous sclerosis complex.

“Tuberous sclerosis complex is a genetic disease that affects how cells control their growth,” he explains. “Although the disease is genetic, most patients get the disease even though their parents do not have the disease. They are the first ones in their family to get it. [TSC] can cause disease by affecting how organs develop, or even if they develop normally they can later develop tumors.”

>> Contine Reading

>> Support Tuberous Sclerosis Alliance