November dedicated for epilepsy awarenessPublished 11:39am Friday, November 23, 2012
One Benjamin Russell High School freshman is living without part of her brain because of epilepsy and this November her grandmother wants to raise awareness of her disease.
“You always hear about cancer,” Donna said. “But nobody ever mentions epilepsy. (When Brianna was diagnosed) it was a huge learning experience for our whole family. I want to use Epilepsy Awareness month to teach people about this disease.”
Epilepsy is a medical condition that produces seizures. The neurological condition affects approximately 3 million people in the United States, which is more than cerebral palsy, multiple sclerosis and Parkinson’s disease combined, according to the Epilepsy Foundation.
“I want to raise awareness of people dealing with this,” Donna said. “It’s a lot more common than people think.”
Donna’s granddaughter, Brianna Jones, was first diagnosed with simple epilepsy at age 9.
Her condition meant she was not able to sleep alone, and before doing things like showering Brianna had to notify her family in case she fell while having a seizure.
“She couldn’t be alone,” Donna said. “She couldn’t be a normal kid.”
She was given medicine and her condition improved until she was 13.
“It came back with a vengeance,” Donna said. “Medicine worked the first time, but didn’t work the second time.”
After treatment and medication failed to work, Brianna was given an EEG to monitor her seizure activity.
“One of the times she was taken off of her medicine so she would have a seizure,” Donna said. “This was very scary for her and all of us. But it was needed to be able to tell the doctor what part of the brain is seizing.”
After doctors reviewed the results and mapped Brianna’s brain, they removed her right temporal lobe in January, leaving her without per phial vision on her left side.
Donna said one of her goals for Epilepsy Awareness month is educating people about the misconceptions of the disease.
“We hope to do away with stigma,” Donna said. “People with epilepsy can lead normal lives.”
Since her surgery, Brianna, now 15, has been seizure free. But she could have another seizure at anytime.
“It could be two years from now, and she could have a seizure,” Donna said. “She isn’t cured, but now she can at least be a teenager. She’ll be able to drive, and she has so many more freedoms.”