S.C. Advocates for Epilepsy

South Carolina Advocates for Epilepsy, founded in 2011, will hold two events in the coming two months.

Awareness event

What: Stroll for Seizure Control

When: 9 a.m. March 22

Where: Hampton Park

Cost: $15 in advance and $20 on March 22. Day of registration starts at 8:30 a.m.

Seminar

What: "Epilepsy: Beyond the Diagnosis." The event is open to all epilepsy patients, family members and caregivers. Dr. Charles Bagley and Dr. Karen Parko will discuss the state of research, it's positive effects, and current Veterans Administration systems relevant to veteran epilepsy patients. Other topics, presented by local neurologists include: How to recognize a seizure and how to respond; Development and importance of strong relationships with clinical teams; treatment options, medicine compliance, nutrition, health literacy and medical marijuana.

When: 8 a.m. April 26

Where: Sterett Hall on the Old Navy Base.

More info: www.scepilepsy.org/ and SAFE's Facebook page.

Seven years ago, life changed for Erick Gordon.

Then 18 years old, Gordon had been active, energetic and engaging. At Goose Creek High School, he played soccer, was captain of the band's drum line and was an avid Ultimate Frisbee player.

After graduating, the young man with a passion for airplanes was well on his way to getting a degree in aircraft maintenance from Trident Technical College.

But on March 1, 2007, he suffered the first of three grand mal seizures in 18 hours. It was the start of a long, rough road of his journey with epilepsy. Early on, he suffered from 30 or more seizures a month.

Subsequent medications, surgery to remove part of his brain's right hippocampus and implantation of a NeuroPace, which is basically a pacemaker regulating electrical activity in the brain of those suffering from epilepsy, has reduced his seizures to about two per week.

He is now on four medications to treat his epilepsy, plus a "rescue" med once he goes into a seizure, but the side effects of those drugs include fatigue.

Between the existing seizures, side effects, fatigue and recovering from memory loss, the 25-year-old has been unable to return to school, to work, or to drive a car.

At a time when most people are hitting adulthood full-stride, Gordon's life is at a standstill.

Hope on horizon?

Yet Gordon is among more than 100,000 people suffering from epilepsy in South Carolina who have new hope.

Many want state lawmakers to pass a new bill, the "Medical Cannabis Therapeutic Treatment Research Act," that will allow for the prescription and research on cannabidiol oil for patients with intractable epilepsy.

The oil is derived from marijuana but is "not psychoactive," meaning that it does not provide the high that most associate with smoking or ingesting pot. Early studies show positive signs for relieving epilepsy.

In Charleston, many have been made aware of the bill, S1035, via its introduction by Sen. Tom Davis, R-Beaufort, and the story of Mary Louise Swing, an adorable 6-year-old Charleston girl who suffers from cerebral palsy and epilepsy.

Her mother, Jill Swing, says she considered moving to Colorado after seeing a report on CNN on a medicinal marijuana called "Charlotte's Web," developed from a strain of cannabis sativa by marijuana breeders there for an epileptic patient named Charlotte.

Davis heard about the plight of the Swings and introduced legislation on Feb. 19 that would allow for researchers at the Medical University of South Carolina to conduct a clinical trial on a pharmaceutical grade of the cannabidiol oil, Epidiolex, manufactured by the British company, GW Pharmaceuticals.

Last November, the Food and Drug Administration granted Epidiolex "orphan drug designation" for use in treating children with the drug-resistant epilepsy, Dravet syndrome.

According to the FDA, The Orphan Drug Act grants special status to a drug or biological product to treat a rare disease or condition upon request of a sponsor. To qualify, both the drug and the disease or condition must meet certain criteria specified in the act and the FDA's regulations.

Orphan status basically allows for adequate and controlled studies while maintaining safety and effectiveness.

Beyond children

Currently, clinical trials on children with epilepsy are underway at New York University and University of California at San Francisco.

Dr. Gigi Smith of MUSC's Comprehensive Epilepsy Center hopes that the state legislation will cover "compassionate use" that will provide medically monitored prescriptions to epilepsy patients who may not qualify for clinical trials, such as adults who have suffered for years.

Without compassionate use, for example, Erick Gordon would not qualify to use it.

"Clinical trials are often very specific, but we have a bigger need out there," says Smith. "People have been waiting a long time and they don't need to wait any longer for a trial to come up."

Sen. Davis says the bill does not currently include compassionate use, but that it is among several amendments that he expects will be attached to it at a Medical Affairs subcommittee meeting set for March 13.

At that meeting, Davis says subcommittee members will hear expert testimony on fine-tuning the bill.

Davis adds that the bill must pass the Senate by March 31 to have a chance at becoming law.

As for Epidilolex itself, Dr. Smith says the drug shows early signs of having fewer side effects, or better side effects, than many current drugs for epilepsy. But it's still early.

"It's important not to label this as a wonder drug," says Smith. "I want it to be positive, but we need to take a scientific approach to know for sure."

She and others worry that sufferers of epilepsy and their families may be so eager for relief that they may try to skip past the process, seeking non-pharmaceutical grade oil with less reliable doses.

"It's hard for people to wait because the first results of the drug are so promising. People are getting excited, but people need to go through their health care provider and GW Pharmaceuticals and make informed decisions."

Rallying the troops

Within the past two years, the state's community of families suffering from epilepsy has become more organized, thanks to the leadership of Karen St. Marie, the mother of Erick Gordon.

In 2011, she founded South Carolina Advocates for Epilepsy and now has active groups in Charleston, Columbia, Myrtle Beach, Greenville and Hilton Head.

St. Marie says she founded the group because of the dire need for the awareness of epilepsy, and what families must endure, in the state.

She says the threat of seizures hangs over its sufferers and their loved ones constantly.

"It's a 24-7 thing. You go to bed with it and you wake up with it," says St. Marie, noting that many still deal with negative reactions to seizures that often include foaming at the mouth and the loss of bladder and bowel function.

"So think if you're out in public and a seizure happens. If you're a child, it's like you had a little accident. But if you're an adult, it's different. I can't tell you how much they deal with. ... It (the threat) is always there," says St. Marie.

"You don't want it to keep you from doing things. You don't want it to completely take every aspect of your life away. It already takes so much. Sometimes you just have to push through because whether we are bowling or at home, you have to push through it."

St. Marie says the epilepsy community in South Carolina was aware of cannabi- diol oil and its potential for relieving seizures before the state's media shed light on it.

"We were aware of it and hopeful it would come to South Carolina but wasn't really sure how to initiate that. Now there seems to be some interest and some political backing to move this forward. It's like the light at the end of the tunnel. We just want to get on the fast track to get to it."

She adds that she hopes families will be patient and seek out treatment with Epidiolex, rather than pursuing "off the shelf" oils such as Charlotte's Web that have not gone through stringent testing and research.

Reach David Quick at 937-5516.