The Stigma of Epilepsy | From Jerry Kill to You

by Daniel Arndt, M.D., Director of Pediatric Epilepsy, Beaumont Children’s Hospital and Shaila Gowda, M.D., Director of Epilepsy, Beaumont, Royal Oak

(Photo credit: Ann Heisenfelt/AP)

(Photo credit: Ann Heisenfelt/AP)

Dr. Arndt:

This past weekend, the University of Minnesota football team traveled to Ann Arbor to face the University of Michigan, but without their head coach Jerry Kill, who suffered a seizure in the early-morning hours of Saturday morning at his home in Minnesota.

Kill is a high-profile epileptic who has had at least five seizure-related episodes since he became head coach at Minnesota two years ago. In September, he suffered a seizure at halftime of Minnesota’s game against New Mexico State and this weekend he missed the trip to Ann Arbor for his squad’s Big Ten opener. The volume of grumbling from fans and pundits alike is starting to get louder as Kill struggles to deal with his disorder.

A seizure is an electrical disturbance in which the neurons fire abnormally and synchronously, causing everything from wild thrashing movements to mild loss of awareness. Epilepsy is diagnosed when a person has two or more seizures. Epilepsy is the fourth-most common neurological disorder in the United States (behind migraine, stroke and Alzheimer’s) and affects around 2.2 million Americans with 150,000 new cases each year.

Epilepsy is one of the least understood neurological conditions and has a stigma attached to it because it’s difficult for people to understand and seizures can be frightening events. Until recently, Kill avoided using the word epilepsy when talking about his condition, fearing that the stigma might hurt him professionally. Until one day a fan emailed him and wrote, “We’ve got a freak coaching the Minnesota Gophers.”

Kill thought of the 300,000 children under the age of 15 dealing with epilepsy and made a stand, becoming an advocate for people dealing with epilepsy and working to promote awareness. One of every 26 people in the United States will have epilepsy at some point during their life.

Dr. Gowda:

It is disappointing to note that despite significant clinical and therapeutic progress, people with epilepsy continue to suffer from discrimination, even in developed countries. Studies have shown that parents were more likely to rate epilepsy than asthma as having a negative effect in the classroom.

Even today, people with epilepsy experience psychosocial problems, especially in their relationships and employment. Unemployment and underemployment among people with epilepsy continues to exist worldwide. This is the result of misconceptions about the condition rather than being directly related to the severity of seizures. There are very few other illnesses that suffer so greatly from such misrepresentation. These misconceptions can be reduced by appropriate education to the media and the general public, as well as professionals and people with epilepsy themselves. Well-known people with epilepsy who are trying to serve as role models should be encouraged to disclose their condition and be provided adequate support.

Beaumont’s new Pediatric Epilepsy Clinic is one step in the fight to stop seizures and improve quality of life for children with epilepsy. Beaumont’s adult epilepsy clinic was established in spring 2012 and both clinics offer comprehensive evaluations, including MRIs, PET scans, EEGs and pre-surgical evaluations. Specialists plan effective treatments,  including VNS implant and surgery when appropriate, for those with moderate to intractable forms of epilepsy. Learn more about epilepsy, treatment options and how to deal with your child’s seizures or your own at the Beaumont Epilepsy Clinic Web page.

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One thought on “The Stigma of Epilepsy | From Jerry Kill to You

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