LONDON – March is national Epilepsy Awareness Month and Epilepsy Southwestern Ontario hopes to correct some misconceptions by sharing stories of real people.
One in 100 people have epilepsy, but many don’t tell anyone their health status because the condition is so misunderstood.
“By creating awareness and education about a condition that affects so many of us, we can begin to provide support for our community members living with epilepsy,” the agency states in a press release.
So here is the story of Amy, a mom of two whose oldest son has epilepsy. Her last name was not provided.
Amy notes that it was difficult to recall her son’s first seizure, because for a long time they didn’t know he was having seizures.
“Somewhere around the age of four, my son started having “episodes” where he would say, “Mommy, I’m so hot.”
“His face would go white or sometimes his cheeks would flush, and often he would fall asleep afterward. These episodes were infrequent, and we thought it was just one of those strange childhood things,” Amy said.
“Time went on and one day he had an episode that was different from the others. He told me that his tummy didn’t feel well and when the episode passed, he said, “Mommy, where was I when I wasn’t feeling well?” It was as if he’d lost memory of that period of time.”
Following this, Amy’s son received a referral for an electroencephalogram (EEG) and a diagnosis of epilepsy was received.
“One thing we quickly learned about epilepsy is that seizures can take many forms. My son has been aware and able to converse with us during all but one of his seizures. He does not have convulsions, but he does have sensations that tell us that seizure activity is happening in his brain. These are called ‘auras’, and for my son, it is a feeling of an upset tummy” states Amy.
Amy notes that her family was fortunate to meet an epilepsy educator from Epilepsy Southwestern Ontario at their first neurology appointment.
She felt that the timing of the appointment was significant as you leave the doctor’s office feeling overwhelmed and with a number of follow up questions.
“When we met with the epilepsy educator at ESWO, we were able to ask her everything that we didn’t think to ask at that initial hospital visit. We also received advice that was crucial to setting us on a positive trajectory after his diagnosis,” Amy said.
Amy said epilepsy has affected her family in both challenging and positive ways.
Seizures can happen at any time, even when minimizing triggers.
“A common virus, infection and especially a fever requires vigilance to reduce the chances that it leads to a seizure. Living in a pandemic adds a whole new layer of worry,” she said.
But she’s developed stronger connections with teachers and school administrators and has found a circle of support amongst her son’s friends and their parents and her own family and friends.
Amy shares that she would like other parents of children with epilepsy to know that they are not alone and that there is support out there.
“I truly believe there is strength in the support we can offer one another. Have courage, ask questions, seek guidance, and know that there are often ebbs and flows with this condition,” she said.
“Sometimes you are making your way through the storm, but these periods pass, and brighter days come again.”
For information about March Epilepsy Awareness Month Events in your community, visit https://epilepsyswo.ca/purplenation/.
