Epilepsy Support Group
Group of Nashville Patients Teams with Doctors to Discuss Illness
Aug 10, 2007
When John Roberts, chief justice of the United States Supreme Court, suffered a seizure recently, there was speculation that he might have epilepsy, and a disease about which there are many misconceptions was in the forefront of the news. But a group of patients and doctors at Vanderbilt University Medical Center in Nashville, Tenn. has been meeting to learn about the disease together for quite some time.
The Epilepsy Educational Group convenes once a month to discuss various topics relating to patient care, from how to avoid triggers to the influence of the body’s hormones on seizure activity and everything in between.
“At clinic, everyone’s in a hurry,” said Melissa Osborn, who works in the neurology department at Vanderbilt and came up with the idea for the meetings. “It’s always important to give patients all the knowledge they need to properly take care of themselves. This way, they can come in and learn in a more relaxed atmosphere. There’s no way we could skim the surface of what we talk about in these meetings in clinic. They’re an hour and a half long!”
Osborn said the patients who attend the meetings benefit from direct interaction with doctors and staff.
“We’ve not had any confrontation,” she said. “Most patients are eager to get any type of knowledge they can. The only way we have problems, and this happens a lot at clinic, is that patients go home and play with their medications. But the people who come to the group know not to do that.”
The meetings are funded by drug companies like UCB and Cyberonics, but representatives have no interaction with patients or influence on the topics discussed. Patients determine the issue of the day.
“The general population is still not educated about epilepsy,” Osborn said. “A lot of people are still afraid of people who have seizures. We want to say, ‘Hey, it’s not contagious.’ There are people who still think in those old terms. A lot of kids are still afraid of people with epilepsy, and most adults don’t know how to deal with it.”
She recommends that epileptics themselves work to educate their families and friends, and that public figures with epilepsy or seizure activity speak about living with the disorders.
“These people are okay. They just have momentary lapses,” Osborn said.
The Epilepsy Education Group meets in the Wadlington conference room at Vanderbilt Children’s Hospital from 6-7:30 p.m. the last Thursday of every month. The meetings are free.
Epilepsy Therapy Development Project
