Activists fight myths about epilepsy
By Loretta Shea Kline
Catholic Key Reporter
KANSAS CITY - Two Catholic women are putting their faith in action through their work to dispel myths and misunderstandings surrounding epilepsy.
Loretta Shea Kline/Key photo
Mary Saulque (left) and Trish Miller of the Epilepsy Foundation's Heart of America affiliate in Kansas City pose in front of educational materials available through the foundation.
As director of education for the Epilepsy Foundation's Heart of America affiliate in Kansas City, Mary Saulque seeks to eliminate misinformation, fear and stigma that have led to discrimination on the job, problems in school, social isolation and other difficulties for those affected by epilepsy, a disorder of the central nervous system sometimes referred to as a seizure disorder.
"We keep hearing the stories today that are passed on popularly from generation to generation," said Saulque, a member of St. Therese Parish in Kansas City, north. "We want to get rid of the myths, and bring the facts to the forefront."
Over the centuries, epilepsy has been wrongly associated with demonic possession, witchcraft, clairvoyance, mental illness and mental retardation, Saulque said.
"Unfortunately, stories die hard, and a persistence of those myths exists today," she said.
The lack of understanding of epilepsy has resulted in fear, and people tend to avoid what they fear, Saulque said. She is working to help people learn to be caring and understanding toward people with a seizure disorder, to recognize various types of seizures and to provide proper first-aid when necessary.
Saulque's co-worker, Trish Miller, fights the fear associated with epilepsy on another front. As director of volunteer services and adult support, she works with people with epilepsy who are not fully disclosing their symptoms, sometimes out of fear of losing their jobs.
"Employment is one of the greatest concerns for people with seizure disorder, and probably one of the greatest areas of discrimination," said Miller, a member of Queen of the Holy Rosary Parish in Overland Park, Kan.
Of all the disorders covered under the Americans With Disabilities Act, epilepsy is the one with the largest number of people unemployed or underemployed, Miller said. Approximately 30 percent of people with a seizure disorder who are able to work are without jobs or are underemployed, the Epilepsy Foundation reported.
Saulque, who was diagnosed with epilepsy four years ago, sees her work with the foundation as a way of "putting my faith in action." She hopes that her efforts to dispel myths and supply the public with accurate, up-to-date information will foster inclusion and acceptance of people with epilepsy.
In her role, Saulque is responsible for planning public education programs in 33 western Missouri counties and the state of Kansas. November was especially busy as it was National Epilepsy Awareness Month. Among activities was a symposium on "Epilepsy and Life Cycle Issues" held at the Crowne Plaza Hotel in Kansas City.
Epilepsy is a physical condition caused by sudden, brief changes in how the brain works, literature from the Epilepsy Foundation said. When brain cells are not working properly, a person's consciousness, movements or actions may be altered for a short period, the foundation said. The physical changes are called seizures.
"A seizure is like an electrical storm that can take place in the brain," Saulque said. "It can take place in a localized area, or it can swamp the brain."
Seizures range in severity from momentary lapses in attention to convulsions, with most seizures lasting from a few seconds to a few minutes and typically resolving themselves, Saulque said. A seizure becomes dangerous and requires emergency medical attention if it lasts for more than five minutes, she said.
"You never know when a seizure is going to happen," Saulque said. "Any seizure can be prolonged and become an emergency situation."
Epilepsy affects an estimated 2.5 million people (1 percent of the population) in the United States, with about 125,000 new cases diagnosed each year. In the Kansas City metropolitan area, some 25,000 people have a seizure disorder, with 9,000 school-age children affected, the foundation reported.
The onset of a seizure disorder can be traced to head trauma, an infection of the central nervous system, stroke, brain tumor, lead poisoning or other cause in about 30 percent of cases, but in the remaining 70 percent there is no known cause, Saulque said. Drug therapy is the most common treatment, and for most people with epilepsy, medication will prevent seizures if taken regularly.
People with epilepsy have experienced discrimination in the workplace, often have difficulty obtaining health and life insurance, have suffered rejection from friends and loved ones, and have been mistakenly arrested for public drunkenness, among other difficulties, Saulque and Miller said.
But with education and an attitude of openness, there is hope, Miller said. She recalled the story of a woman who would walk to a nearby convenience store during a seizure and begin taking items off the shelves and putting them into her bag.
Because store employees knew the woman had epilepsy and that she was having a seizure, they saw that she got home safely, and the woman either returned or paid for the items the next day, Miller said. What could have been an unpleasant situation for all involved was resolved without incident, she said.
Miller, who is studying locally for a master's degree in pastoral studies through Loyola University, New Orleans, said that working with people in a holistic approach to wellness is her vocation. People who are knowledgeable and informed about the mind, body and spirit connection are better able to live with a chronic disorder, she said.
"I'm really looking at the lifestyle issues with people, and part of that is being well informed," Miller said.
Faith communities can help by being a place where people can turn for support and emotional acceptance, and by providing opportunities for people with epilepsy to do outreach and ministry, she said.
"It provides the opportunity for people who are trying to put their faith into practice to build their self-esteem and self-image," Miller said.
For people with a chronic disorder, faith provides a strong underpinning to accept themselves as whole and good, she said.
"Often times it's through one's faith that they find their own self-worth and accept themselves as people of value," Miller said.
Catholics and others can help by volunteering for the Epilepsy Foundation, or by simply offering someone a ride to church or to the store, since transportation is sometimes a problem for people with epilepsy, she said.
For more information about the foundation's programs and services, call (816) 444-2800.