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Vine & Dine To Help Epilepsy Association

Epilepsy Association of the Big Bend

Despite advancements in both modern medicine and public attitudes, epilepsy still afflicts many thousands of people and remains misunderstood by millions.

Credit Epilepsy Association of the Big Bend

Today’s conventional wisdom is that epilepsy is a bit like leprosy. It may still exist, but it’s mostly well controlled by advanced medications. And certainly in this enlightened era, no one would ever lose a job because they have epilepsy. Then you meet Nichole Hill. Eight years ago, she had an epileptic seizure at work. She was given a leave of absence under the federal Family and Medical Leave Act.

"Even though we have FMLA, within 12 weeks it's virtually impossible to get it (epilepsy) under control in 12 weeks," she pointed out. "And so I wound up losing my job and I had been there for years!"

Hill added that this experience was literally life-changing.

"And that's kind of why I started volunteering at the Epilepsy Association," she explained, "Because I was like, 'Spread the word!' The more people that know, the less scary it will be for me as an epileptic and for other people. Because when I'm out in Publix and I have a seizure, it's mass panic! Everyone calls 911 and it really doesn't always require that."

Today, Hill is a board member of the Epilepsy Association of the Big Bend. Its Executive Director, Mandy Biachi, noted that Hill is just one among many thousands of epileptics nationwide.

"In the United States, we have about 300,000-400,000 people who live with epilepsy and seizures at any given time. We have about 100,000 people in Florida and then in the Big Bend region we have 10,000 people that we know of."

And that, said Bianchi, is one of many mysteries surrounding epilepsy. There are untold numbers of people who, either have the disease and don’t understand what it is, or have a suspicion of what it is, but are too afraid or embarrassed to tell anyone. Bianchi said she personally knows more than a few people who fall into that category.

"Once we do get the conversation going and once we talk about how we can help people, the, better things are for families and invididuals," she explained, which is where the Epilepsy Association of the Big Bend can provide lots of help.

"Our agency offers not only the medical support by providing doctors appointments and medication assistance for clients who don't have insurance - that is our number-one role - but we also go into the community and speak at any kind of place that needs our assistance."

Nichole Hill added a prime site for the Association’s demonstrations is elementary schools. To give guidance on what an epileptic seizure is and how to respond to it, she said a toy dog takes the place of the person with epilepsy.

"We pretend that the dog is having a seizure and we show how to hold the dog's head and put a pillow under it and make sure there are no sharp objects around when the dog is having the pretend seizure. And it makes sense to kids! They realize, 'Okay, this is not as bad as I think it is.' But then we also let people know that if this seizure lasts longer than 5 minutes, then maybe there is more going on. Then we really do need to get help."

To provide the resources for these services, Bianchi says her Association is hosting its major annual fundraiser called “Vine and Dine.” It happens this Thursday evening (Nov. 15) at Esposito’s Garden Center on Capital Circle Northeast.

"We set up tables for food vendors and restaurants who generously donate samples of the food, so it's almost like a mini-chef sampling. We also make sure there are lots of different types of wine. That's where the 'Vine and Dine' comes in. We also hae beer from a local vendor. And this year we're having a really popular group called 'The Tobacco Road Band' to provide basically a mini-concert."

There will also be a very large silent auction and lots more. You can get tickets online at the Epilepsy Association of the Big Bend’s web site or at the event itself Thursday evening. www.eabb.org

Copyright 2018 WFSU