Breaking the Stigma: Epilepsy Unraveled
By: Catherine Wysoczanski, Family First
November 7, 2014
Imagine living each day with a vicious stalker following your every move and never knowing when they will strike. You never know if they will attack while you are sleeping, in school, at work or when simply walking down the street. No matter where you go you are being followed. This stalker, which follows more than 65 million people, is known as epilepsy. While at times it may seem like life can be overtaken by this stalker, it is possible to understand epilepsy and advocate awareness throughout the community.
Epilepsy is a neurological condition of the brain that can affect anyone at any time. It is characterized by recurring seizures, which are physical reactions to sudden, brief disturbances in the electrical activity in the brain. “When our daughter, Alexa, was 3 years old she started having seizures,” says First Coast parent, Shauna Anderson. “After I saw the first couple I was trying to figure out what was happening. We found out that she has partial complex seizures,” she says. Shauna and her husband Jonathan learned that a partial complex seizure usually starts in the small area of the temporal or frontal lobe of the brain. The Epilepsy Foundation states that this type of seizure quickly involves other areas of the brain that affect alertness and awareness. Even if the person’s eyes are open and they make movements that seem to have a purpose, in reality “nobody’s home.” If the symptoms are subtle, other people may think the person is just daydreaming. “Alexa was having seizures on the hour every hour. Now she is doing a lot better and only has seizures two to three times a week. She is in third grade and we are blessed that she is so strong,” says Shauna. In the beginning Shauna and Jonathan were unsure of where to turn to get support. “There were so many things we could have done. We probably would have felt more educated with resources and support,” says Jonathan. “About a year after Alexa was diagnosed we found out about the Epilepsy Foundation of Florida. They have resources to help parents and people learn about epilepsy. We’ve gotten very involved and I joined the board [of directors] three or four years ago,” he says. “From a father’s standpoint I would try and connect with somebody to get more understanding of what is happening. It could be a lifetime of trying to figure this out. You have to be patient, and love and support your child. You will figure it out together.”