GIVE
By Emily Lullo
Epilepsy Society of
Northwest Florida For many people, epilepsy is a little understood and seemingly rare disorder that causes seizures, which are often represented in media as simply uncontrollable convulsions. In truth, epilepsy is a neurological condition in which a person experiences recurring seizures and it affects one in 26 people. There are a variety of types of seizures, and knowing the signs and what to do when someone is having one can drastically reduce the chances of an injury or other complication caused by a seizure. With November designated as Epilepsy Awareness Month, there’s no better time to educate yourself about seizure disorders, those affected by them and what you can do to help. A diagnosis of epilepsy prompts many questions and the first place locals can turn for help and support is the Epilepsy Resource Center. Holley Moseley, executive director of the Epilepsy Society of Northwest Florida and a registered nurse, came to the organization a year and a half ago after adopting a child with epilepsy. The Society was started in 1973 by a group of volunteers, and Moseley says her first step was evaluating the current local needs. “We reassessed the community and found out that most people wanted education and support, and we went from there,” she says. “We decided to develop an Epilepsy Resource Center, a place where people can just walk in and it’s almost a first call for help.” The Resource Center can step in to offer educational materials, as well as information on treatments like surgical options that may not be offered in this area. It’s also a first place for newly diagnosed patients and their families to go for support and information that may not come from the physician that diagnoses the condition. While medication can be an important part of treatment for seizures, the Epilepsy Resource Center helps with other aspects of life that the condition affects. “Epilepsy has a whole myriad of other issues like depression, personality changes, and attention deficit disorder, and some of these other issues can debilitate someone’s life” says Dana Hof, a volunteer with the organization and mother of a child with epilepsy. The center also offers support groups. Moseley says the support group for parents has been hugely successful, giving families time to mingle and hear different speakers on various subjects related to epilepsy while children play on a playground just outside the center under the supervision of volunteers. Parents get support in an understanding environment while
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children make connections with other children who also have seizure conditions. “My daughter met another little girl in the group who has the vagal nerve simulator, a device that’s implanted in their chest, similar to a pacemaker, and the idea is that it will stop the seizure before it happens,” Moseley says. “But she always would say she was a robot and it always kind of bothered me that she felt different. Then she ran into another little girl here that had one and it was just a neat connection that she knew she wasn’t so different.” There is also a newly formed social group for young adults called Keys to Independence, which deals with issues young adults face after an epilepsy diagnosis, such as loss of a driver’s license. The group meets monthly to do social activities like attending a Blue Wahoos baseball game or serving dinner at the Ronald McDonald House. Another aspect of the Resource Center’s work is outreach efforts to educate other people in the community about the condition. Moseley works with local schools to teach members of school staff about first aid for seizures as well as the signs of a seizure. Seizures can be as subtle as a child suddenly staring into space and becoming unresponsive or something like a child wandering aimlessly or picking incessantly at a button—actions that can easily be mistaken for behavioral issues. The Resource Center utilizes a puppet troupe called Kids on the Block, a program performed at local schools as well as recently at Barnes & Noble Story Hours. In the story, one of the characters has a seizure, then later explains to his friends what it is and what to do if it happens again. “That’s worked really well and kids respond well,” Moseley says. “Kids are open and they’re more willing as long as they understand the disorder more.” The education and outreach work of the society combine to reduce the stigma and confusion associated with the condition, helping those with epilepsy be better understood and cared for. “I think a lot of people misunderstand epilepsy or have preconceived ideas about it,” Hof says. “There’s a lot of fear and anxiety associated with the condition and I think people don’t understand that statistically epilepsy is more prevalent than a lot of other conditions like muscular sclerosis, muscular dystrophy, and Parkinson’s Disease.” Greater awareness also leads to greater research funding, and with 70 percent of epilepsy cases having unknown causes,