Improving Understanding of Epilepsy

(ARA) - Kelly Richards of Westmont, Ill., is committed to paving the way for her daughter Carly to have as normal a childhood as possible and to reduce the rejection and teasing she faces as a 14-year-old with epilepsy.

"When Carly was in fourth grade, I asked her what she'd wish for if she could have anything in the world. She said she wanted friends to sit with her at lunch. That broke my heart," says Richards.

Epilepsy is one of the most common disorders of the nervous system, affecting approximately 50 million people worldwide with as many as 200,000 Americans diagnosed for the first time each year. Epilepsy produces seizures, which happen when a brief, strong surge of electrical activity affects part or all of the brain. The condition can develop at any time in life, but young children and the elderly are particularly susceptible. Currently, there is no cure for epilepsy; however, seizure medications help control seizure activity for the majority.

To help reduce the stigma surrounding epilepsy, Kelly has talked with classrooms at Carly's school, provided a video for a school assembly and recently, participated in the Epilepsy Empowerment Roundtable in Washington, D.C., with leading neurologists, celebrity advocates and people with epilepsy and their caregivers.

"Three million Americans live with epilepsy, yet the condition is still greatly misunderstood and often stigmatized in this country," says roundtable moderator and Epilepsy Foundation CEO and president Eric Hargis. The roundtable, which was hosted by the Epilepsy Foundation and Ortho-McNeil Neurologics, Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc, made recommendations in response to challenges uncovered by a recent national survey.

According to the survey, three-quarters of people with epilepsy and 90 percent of physicians feel that the general public is not well-informed about epilepsy. The panelists encouraged all people who have epilepsy or know someone with the condition to speak out and share their experiences.

"We are at a tipping point for bringing epilepsy out in the open," says Greg Grunberg, star of NBC's television series "Heroes" and father of a son with epilepsy. "We need to continue the dialogue we started here (at the Roundtable) to increase awareness and break down the stigma that is unfairly associated with this disorder."

Doctor/Patient Communication
According to the survey, 75 percent of epilepsy patients experience medication-related side effects and for the majority, these impact their daily lives, including 57 percent who say work or school are affected.

A disconnect exists between patients and healthcare professionals surrounding their discussions on these side effects. While 98 percent of physicians report discussing medication-related side effects with patients, less than half (47 percent) of epilepsy patients report these discussions take place. And, more than one-quarter of patients report they sometimes feel reluctant to broach this topic during office visits.

"These findings suggest treatment expectations among epilepsy patients are simply too low. According to the survey, 61 percent of people with epilepsy believe that side effects are just something they have to live with," says Hargis. "People with epilepsy should be proactive in discussing their treatment plans, opening up about the side effects they experience and sharing how these side effects are affecting their lives."

Specific recommendations for improving communication and treatment plans included:

* Patients and caregivers should advocate for themselves and discuss their treatment plans, side effects and what other steps can be taken with their healthcare professionals.

* Patients should strive for a more individualized treatment plan by sharing with their healthcare professional a daily diary or record of how they are feeling, any medication-related side effects or breakthrough seizures they experience.

* Patients and caregivers, as well as healthcare professionals, should raise their standards and not settle if the patient is still experiencing seizures or side effects. "It's not a trade off. We may not be able to get every patient to the point of experiencing no seizures and no side effects, but we should never stop trying," says Georgia Montouris, M.D., director of epilepsy services at the Boston University School of Medicine and Boston Medical Center.

* Finally, panelists encouraged patients to not hesitate to seek a second opinion when patients are not achieving their treatment goals.

Visit www.epilepsyfoundation.org to find more information about upcoming 2008 initiatives resulting from the roundtable discussion.

Courtesy of ARA content