November is Epilepsy Awareness Month.
Epilepsy is a unique condition. Ancient civilizations wrote about it and treated it, and it continues to affect part of our population today. One in 10 people will have at least one seizure at some point in his or her lifetime. This means that everyone knows someone who will or has had a seizure.
The condition can start at any point in time; sometimes the seizures of epilepsy occur in response to a head injury or disease. Other times there is no known reason for their occurrence.
There are many different causes and many different treatments for epilepsy. Medication is the usually the first response. One or more medications may be needed to control the symptoms. The use of a vagus nerve stimulator may also be helpful. This is a small technological device, a lot like a pacemaker, that is inserted under the skin of the chest wall. It stimulates the vagus nerve and helps keep the brain in balance to avoid seizures.
Dietary measures, such as the ketogenic diet, may also be prescribed. Children often benefit from following such a medically prescribed diet of very high fat, low protein and almost no carbohydrates. This diet changes the chemical balance of brain nutrients and should only be followed at the advice and supervision of a doctor and dietician.
Another option that has been helpful to many people is a service dog. Seizure dogs are trained to alert the epileptic that a seizure is approaching and to remain with them during the event. The dogs are trained to bark during the seizure in order to notify others and get help.
Surgery may also be an option for those who do not respond to milder treatments. Many of these treatments are used in combination to achieve the best seizure control possible for the patient.
The experience of epilepsy is life-altering for both the patient and his or her family. Parents of young children worry about their children’s safety in the normal activities of childhood. The jungle gym, swings, and the swimming pool can be more dangerous than usual for the child with seizures. Since each child is different, so are their restrictions and freedoms. Parents struggle to encourage their children to engage with the opportunities of life while keeping them safe during seizures. As children grow older, social issues become more important.
Bullying due to the perceived difference between epileptic children and their peers may occur. Children are sometimes teased for not participating in peer group activities. The common experience of memory loss following a seizure can also make for embarrassing moments in the classroom. Being labeled dumb or stupid is not unusual, especially if the child’s peer group is uninformed about epilepsy.
For adults, discrimination in the workplace may also occur. Work time may be lost due to seizures. Ignorance among colleagues about the condition may result in misunderstanding and alienation. In 1998, epilepsy was added to the Americans with Disabilities Act. The protection and awareness resulting from this law enables many people with epilepsy to obtain jobs and continue to work productively.
Although the negative effects of epilepsy are real (often resulting in memory loss, poor coordination, low energy and restricted activity), it is important to know that many famous, high-achieving people have been epileptic. Military leaders such as Julius Caesar, Alexander the Great and Napoleon conquered large parts of the world despite their epilepsy. Van Gogh, Michelangelo and Beethoven were all great artists who lived with epilepsy. Every time we turn on a light, we are making use of the contribution of Thomas Edison, another
epileptic [person with epilepsy].
You are important in the life of people with epilepsy. If you are present when a person has a seizure, watch carefully so that you can tell them later exactly what happened. This information is helpful to their doctor who will base treatment on their symptoms. Remove hazards from the area so that the person does not fall or bump into them. If the person is seizing for more than four minutes, has difficulty breathing or develops a blue complexion, call 911 for emergency medical assistance.
Many seizures are short and do not require emergency assistance, but the person is likely to be confused and disoriented as the seizure resolves. Staying with them to make sure that they are safe and able to resume their activities is helpful.
Your acceptance and understanding are vital. People living with epilepsy need to know that they are respected and valued members of society. Increasing understanding helps to reduce fear and ostracism.
Epileptic Persons with epilepsy can continue to make valuable contributions to society when they are encouraged and supported in their efforts. Even Einstein had epilepsy!
(Rachael Hitt is the secretary for Epilepsy Support and Education Services Inc. for the greater Albuquerque area. For more information, contact: epilepsysupportnm.org)