Community | Epilepsy Education Everywhere
By: Ashley Solis
Every four minutes someone is diagnosed with epilepsy. Believe it or not, epilepsy is more prevalent than multiple sclerosis, Parkinson’s disease and cerebral palsy combined. Even with such a large number of individuals diagnosed each year, epilepsy is still greatly misunderstood by the general population. According to Epilepsy Education Everywhere, “Epilepsy, also known as a seizure disorder, is a neurological disorder producing brief disturbances in the normal electrical functions of the brain that temporarily affects a person’s consciousness, bodily movements and/or sensations, while creating long term effects on the lifestyle of individuals with epilepsy.”
Epilepsy Education Everywhere (EEE) is a non-profit that was started by Executive Director, Meghan Kennedy. We recently had the opportunity to meet with Meghan to get to know more about her and EEE. Meghan shares her own experience with epilepsy, “I was diagnosed when I was 18, my freshman year of college, with epilepsy.” After her diagnosis, she educated herself to fully understand epilepsy and even gave a presentation about epilepsy in her public speaking class in college. Meghan says, “No matter where I have been, I have always gotten involved in educating and connecting with others about epilepsy.”
In 1998, Meghan moved to California and was ready to continue her volunteer work with a local epilepsy organization. At this time, like many others living with this diagnosis, Meghan did not have her driver’s license and didn’t for nine years. This was a challenge because the closest non-profit was located in Los Angeles. After years of trying about 10 different medications, Meghan was able to get her epilepsy under control, and she was then reissued her driver’s license. Once she gained her license back, she was able to explore southern California and drive to LA and San Diego to assist local Epilepsy Foundation affiliates through volunteering, educating and mentoring others. She then disseminated her valuable knowledge to the Inland Empire.
By 2010, 12 years after moving to the IE, Meghan finally listened to others who had suggested that she start her own non-profit. Working part-time, she started Epilepsy Education Everywhere. EEE’s mission is to assist individuals with epilepsy through community education and empowering those diagnosed. Meghan says, “There is a lot of stigma connected with epilepsy. I decided instead of hiding my diagnosis, I wanted to educate the public through presentations, community fairs, interviews, and hosting awareness and fundraising events.”
Meghan states that many people diagnosed with epilepsy struggle with finding the correct medication, diet, and lifestyle changes that will hopefully minimize or control their seizures. She suggests for those who are living with epilepsy to be honest with their doctors and to keep a seizure diary. The seizure diary is helpful to identify your patterns and triggers leading up to a seizure. Meghan shares that she has been prescribed about 10 different medications since her diagnosis, dealt with side effects, and even participated in a clinical trial. Although her seizures are currently under control, not everyone has the same success. Only about 50 percent of individuals get full control of their seizures. Most people choose medication as a treatment option, but there are numerous treatments available. At the end of the day, EEE strives to connect people living with epilepsy to resources and to each other. If you are living with epilepsy, you are not alone, and there is help out there.
If you are interested in volunteering with EEE, there are multiple ways that you can get involved. From grant writing to special events, there is a volunteer opportunity for everyone. Also, EEE Live! is a new series of free webinars that provide education and information about epilepsy. On February 24th at 7p.m. join EEE Live! to learn the “Fast Facts About Epilepsy.” Also, on February 28th at 10a.m. tune into EEE Live! for information about “America's Epilepsy Colonies.” To sign up for the webinars, contact them here. If you want to spread awareness about epilepsy, wear purple on March 26th for international “Purple Day,” an effort to increase awareness about epilepsy worldwide. For more information on upcoming events, visit their website.