Each day in Canada, an average of 38 people learn that they have epilepsy. In 1998, an average of 14,000 people learned that they have epilepsy. 60% of new patients are young children and senior citizens.

Misinformation about the genetics of epilepsy and the effects of epilepsy in women who are pregnant is widespread and have dramatic consequences for women with epilepsy.

An example from a neurologist:

Recently I had a patient who ... got married, and became pregnant. She went to a local physician who told her, "You can't have a baby. You're epileptic, and you're on birth control pills, and you'll have a baby with birth defects."
Then he proceeded with an abortion, without really giving the couple the option to have the child.

Women with disabilities are more likely than others to experience abuse and/or assault.

"For many years I lived in fear of another seizure. I mean fear approaching agoraphobia. Fear of the experience, yes, but even greater was the fear of being seen. Fear of being seen convulsing, perhaps incontinent, grotesque. One public seizure in my high-school would mean the status of a cockroach."

From 1991 to 1994, 159 women were shot, stabbed, beaten, or choked to death by current or former partners.

The annual costs of physical, sexual and emotional violence against women and children in Canada have been estimated at over 4 billion dollars.

These include:

• immediate medical and dental costs
• counselling and social services
• lost time at work, and
• legal, court and prison costs

Epilepsy is one of the leading neurological disorders worldwide.

Awareness of epilepsy both in North America and beyond is growing, but attitudes toward this disorder are still very negative and unfavourable.
Cultural issues largely determine the societal place of men and women living with epilepsy and thus, their quality of life. There are no racial differences in the incidence of the major forms of acquired epilepsy, such as temporal and frontal lobe epilepsy. Mythical beliefs of the origins of epilepsy — including epilepsy as a punishment for sins, epilepsy as a form of bewitchment or demonical possession, epilepsy as a contagious disease, and epilepsy as a disease of the brain — are also transcultural.

These beliefs are untrue and should be stopped.

Unfortunately, women with epilepsy encounter more problems in trying to live an independent life than men with epilepsy do. Their social support networks are also normally restricted to family, neighbours, and health-care providers.

It is the responsibility of each of us to learn and educate others about epilepsy. Education is the most effective enhancer of self-esteem in people with epilepsy. Social support may act as a buffer against the stressors of a chronic medical condition (seizures, stigma and medications), thereby reducing the emotional effects (anxiety and depression) of having epilepsy.

Health care workers, like society in general, still harbour a number of myths about, and prejudices against, people with epilepsy.

These myths and prejudices must be overcome before the physician can play a positive role in patient care. Epilepsy is a disorder occurring within the context of a culture – the patient's culture – that colours the medical, social and individual perceptions of epilepsy.

In order to care for a person with a seizure disorder, a comprehensive, multidisciplinary approach is required, not just a general superficial understanding of the condition of epilepsy. This involves having a clear understanding of each patient's cultural perceptions of epilepsy in order to identify and respond to their expectations when they come for treatment, to plan services that more effectively address perceived needs and to reduce treatment gap.

When patients appear to be well-adjusted to their epilepsy (good seizure control), the quality of life does not diminish. Many factors are involved in ensuring success of any treatment program:
• Try to understand each patient's attitudes towards the on-going treatment.
• Work with other practitioners that your patient may be seeing, including alternative therapists.
• Give each patient a clear concept of the goal of the treatment and the consequences of missing a prescribed drug dose.
• Educate your patient and their families regarding the principles of modern medical treatment of epilepsy.
• Understand the difficulties many women face in trying to see specialists:
  • because of waiting lists
  • work interference
  • lack of money for medication and/or daycare
  • fear of being seen

Many women will see their general practitioner or family physician more often than a specialist for their seizure concerns.

Women are often the survivors of extremely abusive or discriminatory environments when others find out they have epilepsy or a seizure disorder. It is not uncommon to hear stories that cultural beliefs and myths, or societal attitudes about epilepsy, can delay diagnosis or treatment. Many women suffer deep depression daily when trying to accept and understand their seizures. Even seizure control does not necessarily mean control of epilepsy and increased well-being. Even those with low seizure frequencies may have difficulty securing employment and may feel severely affected by their seizures. Some turn to alcohol or other substances to try to escape.
Fortunately, healing is possible. There are many people and organizations who want to help you. Education is one of the key steps to eliminate the stigma surrounding epilepsy. There are many ways you can get involved to "get educated and get active"! Many women have expressed epilepsy as a challenge – a challenge in which they are given the opportunity to become stronger and more aware. You are pushed towards the route to learn to advocate for yourself and not to be deterred by others.