Epilepsy Association of Oklahoma: Where There’s Hope

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Epilepsy Association of Oklahoma: Where There’s Hope

By Mindy Ragan Wood

The Epilepsy Association of Oklahoma (EAO) is making a difference for thousands of people who live with seizure disorders. The non-profit organization offers vital resources and empowering support for those who face the challenges of epilepsy.

About 65 million people have a seizure disorder worldwide. Three and a half million Americans have epilepsy, more than Multiple Sclerosis, Cerebral Palsy, Muscular Dystrophy, and Parkinsons’s Disease combined. As many as 65,000 Oklahomans have a seizure disorder, including approximately 7,000 children.

Seizure disorders range in severity from mild to severe. Absence or “staring” seizures are almost undetectable to those around them, while generalized or “grand mal” seizures render a person unconscious. Draveat and Lennox-Gastaut are life threatening seizure disorders.

Medication is critical, even for those who don’t achieve total seizure control on medication. Getting medication is often an enormous problem. Those who are fortunate to find and maintain employment may not have health insurance. Oklahoma does not recognize epilepsy as a disability, despite the roadblocks to independent living, so they do not qualify for SSI or SSD.

EAO offers a program that pays for medications, up to a year, through their Personal Assist Program. Applicants who qualify receive medication from pharmaceutical companies, including medications for other conditions.

Jenniafer Walters, president of EAO, said usually the stigma associated with epilepsy keeps their members from working, rather than the condition itself. Employers often discover their employee has epilepsy and the worker is fired.

“I’ve had calls from people who work seven to 10 years without a write-up and they lose their jobs. People hear the word seizure or epilepsy and they shut down,” she said.

Walters educates teachers about epilepsy, where the stigma for children begins early. Walters has heard it all. An Oklahoma student was expelled when the school informed the family that they were not equipped to serve the child. One teacher didn’t believe a student had the disorder because she didn’t see any seizures. Another student had been bullied by a teacher.

“The teacher actually told the student her brain was worthless,” said Walters.

Stigma also surrounds medical marijuana, a new approach to seizure control that does not get the patient “high.” Walters said most legislators she has talked to are not educated about it, despite doctors and professionals advocating for its use at the Capitol last year.

“I had state representatives say, ‘what are you going to do, blow it in their face?’ Are you kidding me?” Walters exclaimed, “How ignorant.”

Charlotte’s Web, or CBD (cannabidiol), has been made famous by Charlotte Figi’s astounding recovery on the treatment. Figi, now 8, has Draveat Sydrome, an often fatal seizure disorder in which patients have hundreds of grand mal seizures a week. Since beginning CBD treatment, Figi’s seizures decreased from 300 a week to two or three a month.

Walters said an Ethiopian exchange student had used marijuana to control his seizures for years. After he came to Oklahoma to attend the University of Oklahoma, he was put on seizure medication, but his seizures reignited.

“He’s having 9 to 10 seizures a day and he can’t function to go to school. There has to be something in it (marijuana) that is fixing, healing the brain,” said Walters.

While the success stories keep pouring in for those who are using medicine derived from marijuana, Walters said it’s not a cure for everyone.

“It all depends on how a person metabolizes it. It seems to help those with severe seizure disorders.”

As to where the association stands on the matter, Walters said they support any research that will achieve seizure control. Walter’s daughter has a seizure disorder.

“She’s been on life-support times times, she’s had three surgeries, and I’ve been in every ambulance ride seated beside her through all she’s endured,” she said. “If they’re suffering, what would you do to help them and take the pain away? Would you give them a chance at life?”

That is a chance that could literally save lives, not only for those whose seizure conditions pose a fatal risk, but those who succumb to suicide at the hopelessness of their situation.

According to research in Denmark, epileptics are three times more likely to commit suicide. EAO facilitates support groups for both those who live with seizure disorders and their caregivers.

“We lost several last year to suicide,” said Walters. “They feel isolated, alone, scared. They want to work, pay their taxes, and live on their own. Having a support group lets them open up about what they’re going through. We have a support group that is just for caregivers and we share stories and information that can help.”

Since 1978, EAO has been incorporated as a non-profit health agency and provided assistance to the multi-faceted needs of Oklahomans with epilepsy and their families. To donate or for more information, contact them at 405-271-3232 or visit okepilepsy.org

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