Epilepsy is the 4th most common neurological disorder after stroke, Alzheimer, and migraines. Over 3.4 million people in America live with this disease. There are over 152,000 people in Pennsylvania who have epilepsy. It is called the “hidden disability” because you can’t tell someone has epilepsy until they have a seizure. They look “normal” and walk among us, but at any time, any place a seizure could occur.
When people don’t know the facts about epilepsy, it could lead to major discrimination and harm. Seizures come in all forms, from a blank stare to the opposite extreme where there is a loss of awareness and perhaps convulsions. Anyone at anytime can be diagnosed with epilepsy. People think you are born with it, but that is only a small percentage of cases. You can develop seizures from head trauma, blood clots, tumors, meningitis, encephalitis, hormonal imbalances, drug & alcohol withdrawal, and stress. However, for 30% of cases there are no known reason. 1 in 26 people will develop epilepsy in their lifetime.
Shame, fear, rejection, discrimination and isolation are all too common. This causes people to hide their condition and sometimes to avoid seeking treatment because they don’t want to be identified as “an epileptic.” The stigma stems back to the middle ages where they thought people with seizures were possessed by demons, which some religions still believe today. Also, not long ago society thought people with seizures were insane and they were locked away. In the1950s women with epilepsy were sterilized and were not allowed to marry. In the 1960s restaurants and movie theaters had signs saying “epileptics not allowed.” This is a fight that the Epilepsy Foundation Eastern Pennsylvania has been fighting for 50 years. We want to educate people on epilepsy by telling them anyone at anytime can develop seizures and how to help someone. Knowledge is power and can stop the bullying and shaming of children and adults.
Children and teens are often not invited to parties or sleep-overs because their families are afraid of an “incident.” Their grades may slip because the teachers don’t understand the learning difficulties that come with seizures and medication. They are often labeled as discipline problem when they are having a seizure. Also, since often people diagnosed with epilepsy can’t drive, they are left out from attending social functions or hanging out with friends. Friends tend to be afraid to be alone with someone with seizures. Depression often sets in and the person becomes a loner, depressed and suicidal.
Even with the Americans with Disabilities Act, people are often not hired because employers are afraid of lawsuits from injury or that the person can’t perform as well as others (which is not true). Companies have ways of saying you aren’t as qualified as the person they hired, while knowing you are the most qualified. Employers don’t want to be responsible.
Police often arrest people while they are having a seizure because they become combative. We at the EFEPA provide seizure recognition and first aid trainings to law enforcement, EMS personnel, teachers, nurses, and students, which show the various types of seizures (there are over 30) and explain how to provide life saving first aid. During our trainings for law enforcement we stress how important it is to approach someone during a complex partial seizure instead of putting their hands on them which can lead to that fight or flight response or giving them orders that they can’t follow because they have an impaired consciousness. Often, law enforcement will think that they are being non-compliant and aggressive, which can lead to being handcuffed or tased. These inappropriate and harmful responses are a violation of their civil rights, but courts seem to look the other way.
Some very famous professional football players have epilepsy, but refuse to come out in public for fear of loosing their jobs or discrimination. In addition, some very famous actors, writers, artists and musicians have epilepsy such as Prince, Neil Young, Lil Wayne, Theodore Roosevelt, Danny Glover, Charles Dickens, Truman Capote, Aristotle, Van Gogh, Cameron Boyce, Florence “Flo Jo” Griffith Joyner, and Elton John to name a few.
When you are living with epilepsy having a strong support group to rely on helps tremendously. Also, having family and friends become educated about epilepsy makes all the difference. For more information visit www.efepa.org and contact the Epilepsy Foundation Eastern Pennsylvania at 570-592-1150 or epilepsywv@efepa.org.