Video: Starkville Family Fighting Rare Disease

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STARKVILLE, Miss. (WCBI) — A Starkville family is using social media to spread awareness about a rare disease that nearly one million people world-wide have. The Kinards, father and daughter, say their lives have been severely impacted by Tuberous Sclerosis Complex, or TSC. Now, they’re taking their story to Washington D.C. and using Facebook to get the word out.

“This disease is as common as Lou Gehrig’s Disease. It’s just not as well known,” Shane Kinard said.

Kinard is on a mission to educate the world about TSC.

“The disease is very, very diversified. It can cause tumors anywhere in the body, from the bone to the skin and in any and all major organs,” Kinard said.

The genetic disease is also the leading cause of epilepsy and autism. However, TSC affects each person differently. Kinard discovered he had the disease at age 41. His daughter, Kristen, was born with the disease and suffered seizures as a baby. Doctors believed she wouldn’t live to be eight years old. Kristen is now 26. Still, Kinard says living with the disease is difficult. There’s no cure for TSC.

“It’s a struggle. It’s a struggle every day. Mundane things that people usually think are pretty easy. For us, it can be challenging,” says Kinard.

The Kinards spread the word about TSC on their Facebook page: The Voices of Tuberous Sclerosis. Kinard recently traveled to Washington D.C. for the TSC World conference. He thinks finding a cure is on the horizon.

“The excitement that I saw in Washington from doctors, researchers, professionals. It was like everyone was jumping on a great bandwagon and I am so happy to be a part of it,” Kinard said.

There are about 50,000 people in the United States who suffer with TSC. Individuals seeking more information about TSC can visit www.tsalliance.org.