Epilepsy Foundation seeks to raise awareness in Native communities
November marks National Epilepsy Awareness Month, as well as Native American Heritage Month, and the Epilepsy Foundation has worked to reach out to Native communities to raise awareness of epilepsy and seizure-related disorders. COURTESY
FLAGSTAFF, Ariz. – After his son, Mark, was diagnosed with epilepsy at age 3, United Keetoowah Band citizen Jess Mouse’s life went into a frenzy with having to be a single father, unemployment, dealing with his son’s seizures and finding the right medication.
November marks National Epilepsy Awareness Month, as well as Native American Heritage Month, and the Epilepsy Foundation has worked to reach Native communities to raise awareness about epilepsy and seizure-related disorders.
Epilepsy.com states that epilepsy is “a neurological condition that effects the nervous system” and is known as a seizure disorder. Seizures are caused by “disturbances in the electrical activity of the brain.”
Mouse said he first noticed Mark’s behavior related to epilepsy when his son was 3. Mouse said his son told him his eyes had the “wiggles” and he had a headache.
“Thank goodness because at the time he was able to talk and he was talking to us,” Mouse said. “He came out from my brother’s room and said ‘Oh Dad, my eyes, they have the wiggles. My head hurts.’ So I was really concerned when taking him to the doctor.”
According to Census data, 51,000 Native Americans live with the disorder.
While there are not many studies analyzing incidences of epilepsy in Natives, one study by the University of California-San Francisco examined more than 225,000 Navajo Nation citizens living between 1998 and 2002 that found the prevalence of active epilepsy cases was 9.2 per 1,000 people and that it was higher in males, children under 5 and elders, according to the Epilepsy Foundation.
Epilepsy can cause different types of seizures depending on how severe the disorder is.
“It’s very, very important for people to understand the different types of seizures because each type of seizure has great implications for activities of daily life whether sports or driving may be safe,” Dr. Orrin Devinksy, New York University Comprehensive Epilepsy Center director, said. “They also have great impact on understanding which medications are most effective and even which medications may be harmful.”
Mouse said the doctors were not able to pinpoint Mark’s seizure types until he was 6.
“He had mild seizures that would somewhat resemble a stroke. He would tense up a bit and he would shake or twitch,” Mouse said. “It wasn’t the grand mal seizures with the violent shakes or where you’re really out of control.”
According to epilepsy.com, seizures are classified in three major groups: focal onset, generalized onset and unknown onset.
Focal onset seizures can affect one side of the brain and a person can be either aware or impaired as the seizure happens. Generalized onset seizures affect both sides of the brain at the same time causing specific seizures such as tonic-clonic, absence or atonic. Unknown onset seizures mean the beginning of a seizure is not known and not witnessed, and can happen at night or in a person who lives alone.
The goal of epilepsy treatment is “no seizures, no side effects,” according to epilepsy.com
There are several approaches to treat epilepsy such as medication, surgery, neurostimulation devices, diet therapy and clinical trials.
Mouse said finding the right medication for Mark was a struggle because the ones he tried initially caused allergic reactions. “It was hard to try to find the right medication that would balance him out. My son, he was allergic to certain types of medicine, and the doctor decided to give him a medicine that was in the family of the type that he was allergic to, which nearly killed him.”
After finding a different doctor and a new medication, Mark was able to be on a regimen that balanced him and kept him focused, especially at school, so that his seizures were not triggered as much.
“Seeing your child in that stage of life, being 8 or 9 years old, to have a seizure at school and the teachers at school not know enough about it, how to handle it. They would have to call and we would have to pick him up,” he said.
Mouse cared for his son until he was 17. Mark, now 21, manages his epilepsy and encourages parents or those struggling with the disorder to find the best treatment.
For information, visit epilepsy.com