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Understanding needed for epilepsy disorders by Heather Woolwine Public Relations The following article is the first in a series highlighting national epilepsy awareness efforts on behalf of the national Epilepsy Foundation and MUSC. This article details issues specifically faced by men who have epilepsy. “Men’s Issues in Epilepsy” When: 6:30 to 9 p.m., Aug. 24 Where: Harper Student Wellness Center Auditorium Parking:  Charleston County Parking Garage behind Charleston Memorial Hospital or MUSC Parking Garage behind College of Nursing on Jonathan Lucas Street. Participants are responsible for parking fees. Registration: Contact Pediatric Neurology at 792-3307 to register for any of these free events.  Think of these famous names: Edgar Allan Poe, Charles Dickens and Vincent Van Gogh. Aside from their historical stance as masters of cultural expression and enlightenment, ponder for a moment about what else they may have in common. Give up? All three men had epilepsy.   Technological advances, better medications and nutrition information have further advanced the study and understanding of epilepsy since the times of Poe, Dickens and Van Gogh, but much work remains.   Today, epilepsy is recognized as a valid medical condition. The need for understanding and providing evidence of its burden is essential for improving the lives of people with epilepsy. MUSC researchers in the departments of Neurology, Biostatistics, Bioinformatics and Epidemiology currently are conducting telephone-based research that will shed light on the stereotypes, discrimination and quality-of-life issues that people with epilepsy face.   In a U.S. Centers for Disease Control study, Anbesaw Selassie, Dr.PH., and Chris Koutsogeorgas, a doctoral student and public health researcher, are part of the effort to chronicle the realities for people with epilepsy.   Study participants are classified into two groups: one group consisting of those ages 11 to 17 years old,  and the other on  patients 18 years old and older. It is designed to present a baseline picture of what life is like in South Carolina for people with epilepsy.   “Most studies about epilepsy are either clinical or prevalence-based,” Koutso-georgas said. “However, this study is based on various quality-of-life measures such as self-efficacy, stigma and access to health care. We anticipate that this study will establish evidence that advocacy and grass roots organizations, such as the Epilepsy Foundation of South Carolina, will be used to   leverage services and funding and also raise public awareness. The type of data we are gathering is essential to affecting change. You can be impassioned as anyone, but if you don’t have useful data to enact change, the likelihood of having your request duly considered is relatively low.” A personal investment For Koutsogeorgas, the desire to know more about epilepsy is both professional and personal.   When he was a high school basketball star in Charlotte, N.C., Koutsogeorgas racked up numerous athletic scholar-ship offers, as well as another offer to attend the U.S. Naval Academy. A tall and able-bodied player, his future was as open as the court on which he played until a fall during a basketball game sent Koutsogeorgas to the floor. He landed on his head and the world changed.   “I had my first seizure in front of 2,500 people,” he said. “So, I wasn’t really able to hide the fact that I’d had one. There are many people out there, especially men, who do try to hide the fact that they have epilepsy.”   At the age of 18, however, Koutso-georgas was like so many others beginning to live with epilepsy in that his ignorance of the condition forced him to overcome and face certain things.   “Of course, I wasn’t able to play basketball competitively anymore, and the Naval Academy does not admit people with active epilepsy; so that was out,” he said. “I was accepted to Wake Forest (University in Winston-Salem, N.C.) and that is where I came under the care of Dr. J. Kiffin Penry, a world-renowned neurologist who specialized in epilepsy.”   Prior to finding Penry, Koutsogeorgas’ seizures went largely uncontrolled for two years, because he wasn’t on the appropriate medication for this type of epilepsy.   “Dr. Penry instilled in me to take ownership of my condition, and not to be so fearful of it. He really encouraged me to embrace it and, through that, raise awareness of the condition. He was instrumental in bringing me out of the depression and denial that comes along with the diagnosis. I was very fortunate to come under his care and have since talked with numerous people here who really admire his work and wanted to know more about what he was like as my physician.”   By 1992, Koutsogeorgas had a handle on his condition and was looking forward to continuing his education, but he had a renewed sense of purpose and need for activism. He began volunteering with the national Epilepsy Foundation and served on the South Carolina chapter’s board of directors. He continues to serve as a mentor for the foundation giving presentations and providing patient education.   Koutsogeorgas will present information and insight for men with epilepsy during the educational series at the Harper Student Center on Aug. 24. Men and epilepsy Imagine this. You can’t believe she’s actually agreed to go out with you. She wants to know what time you’ll pick her up. There it is, the look on her face when she hears that you can’t drive.   The bills are piling up, your license was taken away, and you’ve lost your job, because you can’t get to work without a vehicle. Worrying about your family and finances consumes you.   Every time you have a seizure, you feel like everyone looks at you as if there is something inherently wrong with you.  You’re not some spectacle, and you don’t wish to be treated as one.   For men with epilepsy, these situations may not be a daily occurrence, but they are cause for insecurity and depression at some point in their lives. “You have young, middle-aged, and older men with so many different issues related to epilepsy. The difference in needs represented by those age groups is as varied as the disparate needs exemplified by all types of epilepsy,” Koutsogeorgas said. “There are perceptions out there that everyone is looking for the ideal mate and therefore a mate with epilepsy isn’t an option. An illness or a disorder like epilepsy is seen as a chink in the armor, a weakness in a very macho kind of world. Medication side effects can cause any number of embarrassing problems. Men with epilepsy deal with a lot of insecurity, which, in many cases, leads to trying to hide it from others.”   Certain epilepsy medications can cause weight gain, induce short term memory loss, or cause the gums to grow over part of the teeth. Other medications can contribute to  side effects like erectile dysfunction or decreased libido. “It’s not just the idea or the embarrassment of someone seeing you have a seizure, it’s the manifestation of certain side effects that really worry men a lot. The public’s education level about epilepsy is not as high  as we’d like.  That’s why its so important to get people to understand that there are many types of epilepsy  and also different types of seizures,” Koutsogeorgas said. “It is important to realize that seizures are not grand mal and an individual falls to the floor and shakes and shakes uncontrollably.”   As other organizations are dedicated to services of individuals with particular conditions, so, too, is the Epilepsy Foundation of South Carolina committed to assisting those with seizure disorders.   In many parts of the world, people with epilepsy are still considered possessed by demons or unruly spirits. The truth of the matter is that epilepsy manifests itself in numerous types of seizures, with some very obvious such as  the grand mal and others so subtle that the person looks like he’s daydreaming. For some types of epilepsy, such as  those associated with head injuries, men seem to have a higher incidence.   “I’d venture to say that men are probably more prone to types of epilepsy that involve head trauma from contact sports, car wrecks, or other high-risk activities, because men participate in those kinds of activities more than women do,” Koutsogeorgas said. “Epilepsy is really just a broad, umbrella term to describe numerous separate seizure conditions. To better the quality of life for people with epilepsy, we have to get away from thinking in terms of just ‘epilepsy’ and we have to think about the total quality of life for the individual.’”   People with epilepsy can find it hard to establish themselves in the career world, since many employers remain apprehensive  about hiring  a person with epilepsy. For those who choose not to tell their employers, some are discovered when they have a seizure in the workplace and are terminated during a probationary period because of erroneous liability concerns.   Pre-existing medical condition clauses keep many people with epilepsy from becoming eligible for health insurance. Often people with epilepsy must shoulder the heavy financial burden of expensive anti-seizure medication on their own.   “When older men develop epilepsy later in life, many of them are the family bread-winners, and the feeling of not being able to provide for your family increases the individual’s stress level and feelings of insecurity,” Koutsogeorgas said. “In South Carolina, the law is that you cannot drive for six months after a seizure. If you need to get to work but you can’t drive, how will you keep your job? What if you are suddenly unable to get your children to school [or] you can’t go to the store or your church to worship? Developing and living with epilepsy affects many people’s ability to maintain jobs and live full, regular lives because of the social stigma attached to it. People with heart disease, diabetes or cancer are not treated differently because of their conditions, so why should it be any different for people with epilepsy?”   With the persistence of a social stigma around them, people with epilepsy also must face myths associated with the condition. Aside from the age-old myth that people with epilepsy are demon-possessed, some people believe that epilepsy is contagious. “Simply 100 percent not true,” Koutsogeorgas said.   Other misconceptions can be harmful for the person undergoing a seizure.   “It’s impossible for someone to swallow their tongue,” he said. “Only negative results can come from forcing a metal object in someone’s mouth, such as breaking their teeth. As for restraining a person who’s having a seizure, that’s never a good idea. You could hurt them or yourself. Just give them room to have the seizure and let it run its course.” What is epilepsy? According to Koutsogeorgas, we all are capable of developing epilepsy. It just depends on where your threshold is for developing it. The two main categories for epilepsy are generalized and profound electrical discharges over a particular electrical discharge in the portion of the brain. For those who develop generalized epilepsy, their seizures consist of flailing, stiffness, shaking, and/or falling to the ground. That is the most easily associated with grand mal (tonic-clonic) seizures.   Partial epilepsy is further subdivided into two groups: simple and complex. For people with simple partial epilepsy, they do not lose consciousness during a seizure and may exhibit rhythmic jerks someplace in the body depending on the portion of the brain affected. The seizures may also affect their sensation of smell, speech and vision.   On the contrary, people with complex partial epilepsy experience loss of consciousness paired with rhythmic manifestation on the body.   No matter what type of seizure a person seems to be having, Koutsogeorgas stressed the importance of remaining vigilant and recording all relevant information regarding the seizure in order to  help physicians treat the patient to the best of their ability. He also offered the following first aid tips when encountering a person who might be experiencing a seizure: Make sure the person is comfortable. Place something soft like a jacket under his or her head, if necessary. Give the person space to have the seizure by removing sharp objects or furniture. Check to see if the person is wearing a medical identification/alert bracelet or necklace. Time the seizure. If you don’t know if the person has ever had a seizure before or if a seizure lasts longer than five minutes, call an ambulance. Loosen any tight clothing, i.e., a man’s tie. At the conclusion, make sure the person is in the recovery position on his or her side in case of vomiting. Once again, do not place any object in the person’s mouth. MUSC Neurosciences teams up with S.C. HOPE and the Epilepsy Foundation to bat for epilepsy awareness   Show support for people with epilepsy, get information, and raise awareness by attending the last home game for the RiverDogs Sunday, Sept. 3 at 4:30 p.m.        Friday, Aug. 18, 2006 Catalyst Online is published weekly, updated as needed and improved from time to time by the MUSC Office of Public Relations for the faculty, employees and students of the Medical University of South Carolina. Catalyst Online editor, Kim Draughn, can be reached at 792-4107 or by email, catalyst@musc.edu. Editorial copy can be submitted to Catalyst Online and to The Catalyst in print by fax, 792-6723, or by email to catalyst@musc.edu. To place an ad in The Catalyst hardcopy, call Island Publications at 849-1778, ext. 201.