Conference on Epilepsy to Offer Information in Spanish

The Epilepsy Foundation of Greater Los Angeles will host a two-day Epilepsy Brain Storm Summit at the Cathedral Conference Center this weekend, with Saturday's activities presented in English and Sunday's in Spanish.

The yearly conference will have a variety of informational activities ranging from panels on the latest treatments for epilepsy to workshops that will help people navigate the healthcare system.

Organizers are encouraging people to attend the summit so they can better educate themselves about epilepsy.

“[The Brain Storm Summit] is especially unique,” said Susan Pietsch-Escueta, executive director of the Epilepsy Foundation of Greater Los Angeles, in a statement. “[This] is the only conference of its kind in the region.”

Epilepsy is a neurological disorder that is typified by unprovoked seizures. There are 25 different syndromes of epilepsy and close to 3 million people in the United States have a form of it. The number and severity of the seizures can vary from a couple minor ones a year to several daily in severe cases.

Misinformation about epilepsy is rampant and the conference is one of the many ways that the foundation works to combat it. Lack of accurate information can lead to serious isolation, and desperation, for individuals with epilepsy and their caretakers.

“We get dozens of phone calls, and the common thread is isolation,” said Audrey Sunu, communication and outreach coordinator for the Epilepsy Foundation, a regional nonprofit that acts as a resource center for people with epilepsy. “The reason why we do a lot of direct social events with individuals is because they are one of the most requested things.”

The conference and social oriented activities have helped individuals with epilepsy cope with their disorder and bring them out of their isolation.

“I found out that there were people like me,” said Nicole Achkar, 20, a South Gate resident, who has had epilepsy since she was a child.

Her bravery when young led to her selection as the first bilingual “Winning Kid” by the Epilepsy Foundation. She was 8 years old. The honor is bestowed on a child who demonstrates the courage displayed by youngsters with epilepsy.

“I am not afraid to tell my friends about my condition, or anything like that,” she said.

Ashkar was misdiagnosed in the early stages of her life. It was thanks to the information given to her mother, Gloria Borja, by the foundation that she was properly diagnosed.

“I was so relieved when I found out what was going on,” said Borja, also a South Gate resident. “I felt so lost taking her to the doctor and not knowing what was going on.”

Not all Latino parents or family members have been as dedicated to learning about the condition as Borja.

The foundation has hosted the Spanish portion of the summit for close to a decade, but still faces barriers in addressing misconceptions about epilepsy within the Latino community.

“There are some who still think that epilepsy is a demonic possession,” said Lupe Martinez, coordinator of Spanish language programs for the Epilepsy Foundation. “[Individuals with epilepsy] will hide this from family members, and as a result will not receive the proper treatment.”

The right information can empower many people with epilepsy to lead normal lives. Achkar has been able to do this and is currently studying psychology at Cerritos Community College.

“It hasn’t stopped me from doing things that a person my age can do,” said Achkar. The right medication has reduced her seizures to twice a year. The social activities organized by the foundation, and her own mental strength, have led Achkar to accept her condition. "The older I get, the more I accept who I am."

The Brain Storm Summit 2012 will be hosted from 8 a.m. to 5 p.m. on Saturday (English) and Sunday (Spanish) at the Cathedral Conference Center, 555 W. Temple St. in Downtown Los Angeles. Tickets are $20 per person and $30 for two people. For more information, or if you need financial help to purchase a ticket, call 800-564-0445.