Family hopes spotlighting child’s life with epilepsy will bring awareness about the disorder

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By: Denise Valdez

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LAS VEGAS – Epilepsy is a fairly common diagnosis, but it’s not commonly talked about.

It turns out there are more than twice as many people with epilepsy in the United States of America as there is the number of people with cerebral palsy, muscular dystrophy, multiple sclerosis, and cystic fibrosis combined.

One little girl lives with it every day, and her family hopes the more people know about and talk about epilepsy, the brighter her future may be.

Puzzles and playtime are part of the treatment plan for Story Miller. The 4-year-old girl has a genetic form of epilepsy which evolves as she grows.

“When she was first diagnosed she had three kinds, and then one and a half years later she had a new kind, so it kind of changes and it’s not something that stays constant,” said Chelsea Miller, Story’s mother.

Story is one of an estimated 26,000 people in Clark County with epilepsy.

“It’s more common than Parkinson’s disease, said Dr. Samir Bangelore.  “It’s more common than MS combined.”

However, epilepsy is not really discussed.  Dr. Banglore, a neurologist, says it’s because there’s a stigma.

“It is a condition that is also somewhat embarrassing and stigmatizing, so not as many people come out of the shadows and admit that they have epilepsy,” Dr. Bangelore said.

Which is very surprising considering a majority of patients are effectively treated with medicine.

“Two-thirds of patients become seizure free even on the first or second medicine you try, and there are 20 of them,” Dr. Bangelore.

Story’s seizures are varied and unpredictable, but the whole family helps out, especially her big brother Conner.

“I help with her like when she doesn’t have shoes,” Connor explained.  “When she has a seizure I help my mom and dad out.”

Plainly put, electrical disturbances in the brain causes seizures, but in some cases, it can be crippling.

“Learning disabilities, behavioral disabilities delay her speech,” said Miller. “There’s a lot involved that I never even knew was part of it.  Epilepsy you think, oh seizures, but there’s so much more involved to it.”

Most patients will manage their condition for life, but sharing their struggle can be a strong drug as well.

“A lot of people have to battle depression, and that can be helped a lot with socialization and removal of that stigma,” Dr. Bangelore said.

“I think that’s really important because there’s a lot of downs involved in our life and so it’s really important to find that happy place,” Miller said.

Source:http://www.lasvegasnow.com

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