Aug. 1, 2011.
Dennis Terry will never forget the date of his daughter’s diagnosis with epilepsy.
“You know what?” Terry said, “Before we were involved come Aug. 1, 2011, never heard anybody talk about [epilepsy].”
The silence broken, however unwanted or unexpected, Terry had to listen.
Now, he’s speaking out.
Terry will share his daughter’s, his family’s, story on Oct. 31 at Williamsburg’s inaugural Awareness Stroll, organized by the Epilepsy Foundation of Virginia.
Approximately one in 26 people develops epilepsy, according to a 2012 report by the Institute of Medicine. Epilepsy ranks fourth among most common neurological disorders, following migraines, strokes and Alzheimer’s, the report states. Still, public understanding of the disease remains limited.
On Aug. 1, 2011, Terry’s daughter prepared to enter her third year of college in pursuit of nursing. The onset of epilepsy came out of seemingly nowhere.
Now, she experiences anywhere from one to five known seizures each day. This translates to practical challenges in mobility, education, employment, social situations, independence.
The family has seen multiple neurologists. Terry said they’ve tried nearly every medication, combination of medications and treatment for controlling seizure activity. Side effects kicked in, but positive results did not.
About one-third of epilepsy cases are intractable, or uncontrolled by medications, according to the Epilepsy Foundation of America.
Terry and his wife, Missy, unceasingly worry for their daughter’s safety, for her quality of life.
“You, as a parent, continue to strive to find something that’s going to help your child,” Terry said.
His pursuit has crossed state borders. With nowhere else to turn, Terry now seeks a solution in medical marijuana, shown to have potential effect in controlling seizures.
In February 2015, Governor McAuliffe signed into effect a bill decriminalizing for those with intractable epilepsy the use of Cannabidiol and THC-A oil, said Patty Hood, director of the Hampton Roads and Peninsula regions for the Epilepsy Foundation of Virginia.
The challenge lies in marijuana’s label as a Schedule I narcotic. This limits access and research.
Terry and the EFVA advocate for reclassifying it to Schedule II.
“That would open up the door for tons of research,” Terry said. Research to find some benefit, any relief, for those who have exhausted every other option.
Terry’s unending pursuit of a remedy led to a connection with the EFVA, and specifically Hood.
Hood said the 2012 census revealed 80,000 known cases of epilepsy in Virginia, and the 2010 census tallied 12,000 cases in Hampton Roads.
But Terry said his family has largely felt isolated in their experiences since Aug. 1, 2011.
“Many people don’t want to admit or tell anyone,” Hood explained. “They don’t want it known they have seizures.” They’re afraid of the stigma surrounding epilepsy.
Since 1978, EFVA has promoted awareness of epilepsy and supported those diagnosed. Services include public and professional education, support groups, transportation assistance and more.
Perhaps the most effective tool is voice. For those affected, to start the conversation. For others, to listen.
“If people are open about it, the stigma will be reduced,” Hood said. “An awareness will create faster recognition, diagnosis and care.”
“It’s a diagnosis, but it shouldn’t limit their ability to work or to live a full life,” she said.
Hood and Terry hope to grow EFVA in the Peninsula. The area’s first support group met in September at the Williamsburg Regional Library. Hood will set the date for the next meeting.
Terry attended the group’s initial meeting, finding the connections invaluable: “We can all come together and share this knowledge, share what we know, share what we’ve learned,” he said. “You can learn as much or more in those meetings as you can going to the doctor.”
The Oct. 31 Stroll presents another opportunity for conversation about epilepsy in Williamsburg.
For the Terry family, and many others, the journey is a difficult, often painful, one. But not without hope.
Terry will continue speaking up, ever louder. He’ll continue reaching out. And he’ll never stop seeking a remedy.
“You can’t stop trying for your loved ones,” Terry said. “You can’t.”
If interested in the Williamsburg support group or seeking general information, contact Terry at Dennis.Terry@parsons.com or reach Hood at 652-6565 and efva.hr@gmail.com.
Visit efva.org or find Epilepsy Foundation of Virginia on Facebook.
Bridges can be reached by phone at 757-275-4934.
Williamsburg Epilepsy Awareness Stroll
When: 1-3 p.m., Saturday, Oct. 31. Registration at 12:30 p.m.
Where: Matthew Whaley Elementary School, 301 Scotland St.
What: Costumes encouraged at this 1.8 mile walk. Three speakers featured, including Terry. Raffles, refreshments and vendors also present. Funds raised support the Epilepsy Foundation of Virginia. Registration occurs onsite, but donations also accepted online.
Registration: $25/walker, free for children.
