Tag Archives: epilepsy

Emma Borys Speaks Up — And Out — About Epilepsy

Last October, “06880” honored the work Emma Borys was doing with epilepsy. The Staples High School junior — diagnosed with the disease in 6th grade — is an outspoken advocate for research and education.

This spring, she was chosen as the Epilepsy Foundation of Connecticut‘s representative for a lobbying effort in Washington, DC.

Emma had been helped by trainers who spoke to her teachers about the myths and realities of epilepsy.

But many students don’t have that opportunity. The DC program brought teenagers to the Capitol, to urge their representatives to approve CDC funding for that educational program.

Emma joined one student from each state. They gathered in a large room, and shared personal stories. The goal was to help them become comfortable speaking the next day with legislators.

“I’d never really talked to another teenager about epilepsy,” Emma says. “It’s great to realize we have similar experiences and hardships.”

The next day, Emma met with her congressman, Jim Himes, as well as 2 other Connecticut representatives: Rosa DeLauro and John Larson. She also spoke with staffers from DeLauro and Joe Courtney’s offices.

Congressman Jim Himes and Emma Borys.

All were very receptive. The mother of a Himes staffer has epilepsy, Emma says, so he seemed particularly interested.

Emma felt empowered and energized by the lobbying day. But her advocacy is not over.

Last weekend, she participated in a fundraising march in Stamford. She was proud of her efforts — and wants “o6880” readers to know that donations can still be made through May 25. Just click here to help.

Gabi Titlebaum Seizes The Moment

Having epilepsy sucks.

Being diagnosed in 7th grade is particularly tough.

But it happened to Gabi Titlebaum. Now a Staples High School junior, she’s endured 4 years of seizures, tests, medications and questions.

She could feel sorry for herself. Instead, she makes people laugh.

Gabi has just started a blog: “Seize the Moment.” Yeah, the pun is intended.

Gabi Titlebaum, enjoying life.

Gabi Titlebaum, enjoying life.

In October she described her 1st “out-of-body, tripping on LSD (not that I would know what that feels like) feeling.” She was shopping for “a stupid bat mitzvah dress” when she felt that “indescribable aura.”

Her aim is to share the many funny stories that happen throughout her journey. She won’t shy away from emotional posts — “it is epilepsy, not puppies and unicorns” — but she wants to show that it’s okay to laugh.

Gabi’s 2nd post was about EEGs. The test involves a foul-smelling glue that she thinks may have given her a lung disease; wires that feel like “a 10-pound rock is lying on your head,” and a strobe light “3 inches away from your face.”

Her last EEG was portable. So Gabi walked around New York “looking like I just got out of brain surgery.” Fortunately, she says, “harsh New York locals were a little bit nicer to me that day.”

Gabi Titlebaum

Gabi Titlebaum

Gabi also writes about a Boston neurologist who took “half a lifetime” to diagnose her. He prescribed medicine that turned her into “a zombie.” She could not get out of bed, could barely hold a conversation — and it did not even stop her seizures.

After many months, Gabi went back to him. He looked her in the eye and said, “I’m not so sure about the diagnosis.”

Gabi’s revenge comes via her blog. “So Boston doctor,” she writes, “screw you.”

Clearly, epilepsy is not keeping Gabi down. In addition to writing, she’s volunteered with Best Buddies and Unified Sports — 2 Staples activities that help students with special needs.

“Everyone goes through something,” she says.

True. But not everyone manages to Seize the Moment the way Gabi Titlebaum does.