Should Intractable Epilepsy be a registerable disability?
	As defined by the World Health Organization, a disability is the restriction or lack of ability to perform activities in the manner or within the range considered normal for human beings. Intractable Epilepsy (IE) has been defined as two or more seizures per month for a period of 2 years. This condition can be disabling in many ways as it has a number of practical implications. Though awareness has increased, stigmatization is still highly prevalent and for many individuals, epilepsy remains a defining feature of their identity. The profound medical, psychological and social consequences of IE are often the cause of more suffering than the seizures themselves.
	People with epilepsy as opposed to others, have a greater chance of developing other co-morbid conditions like heart problems, respiratory problems, problems in the digestive tracts etc, compared to their peers in the community. Day-to-day issues include disturbances in sleep and appetite, injury, loss of consciousness etc. Antiepileptic drugs are usually used for treatment of patients with epilepsy. These drugs may however have side effects like allergic reactions, dose related effects including drowsiness, dizziness, unsteadiness, poor concentration, memory and slurred speech and chronic effects including swelling of gums, acne and weight gain.
	People with IE have a number of psychological difficulties as well. Mood disorders and anxiety symptoms are common. They are often depressed and worried about their condition and about their future. Having frequent seizures has an effect on the individual's self-esteem and self-image and often leads to feelings of worthlessness, dependence and self-pity. Further, in a developing nation like India, social implications of epilepsy are quite high and varied. Patients with epilepsy are usually stigmatized, and this can take the form of overt discrimination or subtle prejudice, the latter being more common. Attitudes towards people with epilepsy continue to impact their overall quality of life. Problems are especially felt in the fields of education and employment, personal relationships and, sometimes, even law. Patients with epilepsy in India (especially in the rural and uneducated sector) are also mistreated in ways believed to be culturally and religiously significant in treating seizures. The implications and repercussions of intractable epilepsy are faced not only by the patients, but by the caregivers as well. Treatment costs need to be met. Many people with IE need to be escorted everywhere and cannot be left alone for extended periods of time. They may get injured while having seizures. Their depressive and anxiety symptoms along with their mood swings have to be dealt with. Thus even daily living becomes cumbersome and seems like a monumental task. Living with intractable epilepsy is therefore not easy. The condition is physically, psychologically and socially disabling and satisfies the WHO criteria of "disability". It therefore seems obvious that intractable epilepsy should be considered a registerable disability. This is however only one side of the coin. On the flipside, there are a few important issues that need to be considered before categorizing intractable epilepsy as a registered disability. Would labelling a person with epilepsy as "disabled" lead to increase in stigmatization? Considering that intractable epilepsy responds well to medical treatment and surgery, there is hope for people with IE. Thus, should it be categorized as a permanent disability or would it be appropriate to review this periodically? Who should be the deciding authority? What are the criteria that should be followed to make this decision? These are important issues that need to be clarified out before intractable epilepsy can be considered a registerable disability. A group of epilepsy and disability professionals are to discuss these and related issues in a workshop conducted by Neuroscience India Group (NSIG) that is scheduled to be held in December 2006.