Burden On Patients Families And Communities

Worldwide, 50 million people have epilepsy. Many more people, however — an estimated 200 000 000 — are also affected by this disorder, as they are the family members and friends of those who are living with epilepsy. Around 85% of people with epilepsy live in developing countries. There are two million new cases occurring in the world every year. Up to 70% of people with epilepsy could lead normal lives if properly treated, but for an overwhelming majority of patients this is not the case (18).

Epilepsy is among the disorders that are strongly associated with significant psychological and social consequences for everyday living (19). People with hidden disabilities such as epilepsy are among the most vulnerable in any society. While their vulnerability may be partly attributed to the disorder itself, the particular stigma associated with epilepsy brings a susceptibility of its own. Stigmatization leads to discrimination, and people with epilepsy experience prejudicial and discriminatory behaviour in many spheres of life and across many cultures (20).

People with epilepsy experience violations and restrictions of both their civil and human rights. Civil rights violations such as unequal access to health and life insurance or prejudicial weighting of health insurance provisions, withholding of the right to obtain a driving licence, limitations to the right to enter particular occupations and the right to enter into certain legal agreements, in some parts of the world even marriage, are severely aggravated by epilepsy. Discrimination against people with epilepsy in the workplace and in respect of access to education is not uncommon for many people affected by the condition. Violations of human rights are often more subtle and include social ostracism, being overlooked for promotion at work, and denial of the right to participate in many of the social activities taken for granted by others in the community. For example, ineligibility for a driving licence frequently imposes restrictions on social participation and choice of employment.

Informing people with epilepsy of their rights and recourse is an essential activity. Considering the frequency of rights violations, the number of successful legal actions is very small. People are often reluctant to be brought into the public eye, so a number of cases are settled out of court. The successful defence of cases of rights abuse against people with epilepsy will serve as precedents, however, and will be helpful in countries where there are actions afoot to review and amend legislation.

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