Epilepsy affects nearly one out of every 100 persons in the world. Even more remarkable is the fact that one in ten persons will have a seizure during their lifetime. Yet epilepsy remains a mysterious illness to most of the public. As a result there is little interest in epilepsy, which in turn results in relatively little funding for epilepsy care or research.

There are several factors that are responsible for this problem. Epilepsy has been long associated with many misconceptions about its causes. Since epilepsy education is almost nonexistent in schools, these misconceptions perpetuate and grow. Embarassment of having epilepsy has caused patients and their families to hide their condition, which further removes it from the public eye. The result is a lack of any impetus from the public to improve awareness, and ultimately, funding for this problem.

This lack of general interest even affects medical education. Because of the perceived lack of importance of epilepsy, only minimal epilepsy education is provided for physicians and other health care workers.

What can you do?

1. Become an activist.

Speak up for increasing epilepsy education at your schools and workplaces. Many Epilepsy Associations offer educational courses for classes and for businesses, but cannot reach these audiences because of lack of cooperation. Ignorance is probably the greatest barrier to improving epilepsy care, and your help is needed to push for improved knowledge about epilepsy and its care.

2. Support your local Epilepsy Association.

Your local Epilepsy Association is working hard to disseminate information about epilepsy and to act as advocates for persons with epilepsy. However, most Associations are struggling to keep financially afloat. You can help in many ways. Donations, even in small amounts, are greatly needed and are put to good use. Your time is a valuable resource; most Associations can always use extra help.

3. Support epilepsy research.

The amount spent on epilepsy research is very small when compared to the size of problems caused by epilepsy. Write your congressman and senators to urge them to increase funding for epilepsy research. Ask organizations to raise funds for epilepsy research. If you are associated with a large business, suggest them to endow research funds for epilepsy research at Universities and other research institutions.

4. Speak up for yourself.

Don't be ashamed of having epilepsy. Instead, help others to understand what epilepsy is and what it is not. The best way to improve your care is to become your own advocate. Take an active part in your epilepsy care. Keep a careful track of your seizures so that your doctors can know when your seizures are improving or worsening. Don't miss medications or doctor appointments. Carefully assess problems you may be having with your medications (for example, drowsiness, problems thinking, unsteadiness) and be sure to bring it to the attention of your physicians. Don't be afraid to ask questions or expect answers.

In the end, changes in epilepsy care will not come from politicians and officials; they must be driven by those who are affected the most -- persons with epilepsy and their families. Pledge yourself to take on this important challenge.