When it comes to living with epilepsy, there’s no one age group that it affects. Epilepsy is a neurological disorder that people of all ages can experience. According to the national Epilepsy Foundation, it is a spectrum condition and is typically diagnosed when a person has “two unprovoked seizures (or one unprovoked seizure with the likelihood of more) that were not caused by some known and reversible medical condition like alcohol withdrawal or extremely low blood sugar.” People with epilepsy face not only the difficulties that arise with the condition but also a public misunderstanding about the disorder.
In 1977, the Epilepsy Alliance of Louisiana was founded. It has since joined six other organizations across the nation to form Epilepsy Alliance America. Together, these groups work to provide resources and support for people with epilepsy and their caregivers.
Julie Martin was named Executive Director in April 2019. By overseeing the organization’s many services, Martin hopes to better reach the Louisiana epilepsy community. Epilepsy Alliance Louisiana has three full-time staff and two part-time staff spread across the state to get information out about events and provide resources statewide.
“There are about 54,900 people diagnosed with epilepsy in Louisiana,” Martin says. “We want to reach out to all 54,900 people and let them know they’re not alone and that we have resources for them. I’m very lucky to work with such dedicated people.”
Some of the services Epilepsy Alliance Louisiana provides are case management, Q+A clinics, and emergency training. When a person with epilepsy or his or her caregiver encounters a problem, he or she can call the organization to speak with a case manager. The case manager answers a number of questions ranging from issues with insurance to obtaining training. Sometimes, the case manager refers the caller to state resources for better help.
Epilepsy Alliance Louisiana currently provides Q+A clinic sessions in Baton Rouge, New Orleans, Shreveport, and Covington. At these events, guests learn from a guest speaker who is knowledgeable about epilepsy. These clinics are free and allow the epilepsy community to receive valuable information straight from the source. In Baton Rouge, these clinics are held at the Main Library.
Epilepsy Alliance Louisiana is entirely funded through donors, state grants, and fundraising events. The organization’s biggest events are Seats for Seizures and Seize the Day 5K. At Seats for Seizures, on November 10, guests can purchase seats at a table for a gala filled with games, a live auction, and guest speakers. The Seize the Day 5K offers food, drinks, and a live band. The events help raise funds to continue its mission.
Martin says the best part of her job is connecting with families. Her husband was diagnosed with epilepsy, so she understands. “Getting a diagnosis can be very scary and you can feel like you’re the only one,” she says. “I go to most of our clinics and Q+A sessions every week, so seeing families light up when they realize they’re not alone is the best part of my job.”