Very few people know that epilepsy is not a disease but a disorder with a group of possible syndromes that have varying forms of the same symptom: the convulsion or seizure. Seizures range from very mild staring episodes or absence seizures (formerly known as Petit Mal) to the uncontrolled movements of generalized tonic-clonic seizures (formerly known as Grand Mal). Seizures result from abnormal brain activity and affect individuals of all ages, with the majority of those affected in the first year of life and with a rapidly increasing peak in the elderly between the ages of 60 and 75 years.
Most seizures occur in otherwise normal individuals and 70% of the 300 000 Canadians with epilepsy can control their seizures with currently available medication. For the rest of the people, 30% of those affected by epilepsy, representing approximately 100 000 Canadians at any given time, epilepsy syndromes produce much more than just seizures and are often accompanied by learning disabilities, behavioral problems, memory loss, psychiatric disorders and/or other adaptive problems that prevent a normal life. Most of the severe epilepsies follow a serious injury such as birth trauma, a car accident or stroke. Unfortunately the current medical treatment for these epilepsies, often multiple medications taken simultaneously, most having to be periodically adjusted, does not properly control seizures and does not at all improve these associated problems.
Every Canadian likely knows someone affected by epilepsy in some way but may not even know it. Those affected by it, due to the stigma that surrounds it, often remain silent.
In 50-60 % of all cases, the cause of epilepsy is unknown. No specific cause is found. For the other epileptic seizures, the following causes are the most frequent:
It is almost unfathomable that a condition affecting as many as 1 in every 100 Canadians, or 1% of the population1, is so ill understood in this country. With 15 000 new cases diagnosed every year, the numbers are higher than the number of colon cancers diagnosed every year and almost as high as the numbers of breast cancer or prostate cancer diagnoses each year2 . It is equally shocking that for a condition as common as this is, the stigma and the myths surrounding it are so deeply ingrained and widespread.
The term epilepsy comes from Latin « epilepsia » and Greek roots « epilambanein » meaning to brutally attack or to take possession of. This may explain some of the deep-rooted stigma from the times of Aristotle but does little to explain why people living with epilepsy in this day and age still have to deal with this stigma in everyday life. Why is it that the public knows so little about epilepsy?
1 - José F. Tellez-Zenteno, Margarita Pondal-Sordo, Suzan Matijevic, Samuel Wiebe (2004), National and Regional Prevalence of Self-reported Epilepsy in Canada, Epilepsia 45 (12), 1623–1629.
2 - According to report of breast and prostate cancer annual diagnoses in 2004, from Cancer, new cases, by selected primary site of cancer, by sex , Statistics Canada