JOIN USMeena is a 25-year-old woman living with her mother and a two-year old daughter in an urban village near Delhi.
Meena was diagnosed with epilepsy when she was 13. Initially, she was taken to a faith healer who treated her for the supernatural causes but her condition worsened. Her condition improved when she was taken to a specialist and the frequency of seizures decreased.
She did not have a seizure for three years after which she got married. Meena’s husband and his family were not told about the seizures and she stopped taking her medicines after marriage. She was in first trimester of her pregnancy when she had a seizure after about five years.
She started taking medicines again, but she was not compliant with her medicines. Her husband and his family were angry with Meena for hiding her condition. Meena could not tolerate the negative attitude and criticism, and left husband’s home to live with her mother.
Meena’s story is one of the many such incidents faced by people who suffer from epilepsy. Epilepsy is a chronic condition of brain that affects people of all age groups. It is characterised by recurrent seizures or fits. It is estimated that the overall prevalence of epilepsy in India is 5.59-10 per 1000.
Globally, studies have reported a range from 2.2 per 1,000 to 41.0 per 1,000 persons, with a higher estimates in low and middle income countries where according to a WHO estimate, 75 per cent of people with epilepsy don’t receive appropriate treatment. The lack of knowledge of antiepileptic drugs, poverty, cultural beliefs, stigma, poor health infrastructure, and shortage of trained professionals contribute for the treatment gap in countries such as India.
There is evidence to suggest that epilepsy can be successfully treated with anti-epileptic medication taken without interruption. However, specialists are few in number (about 2,000 neurologists in India) and are mostly concentrated in urban areas or large hospitals.
Additionally, the anti-epileptic drugs are expensive and not easily available at all places. Hence, most patients don’t avail the evidence-based treatment and when they do, a majority of them don’t remain compliant with the treatment. Epilepsy, if not treated, can become quite disabling and restrictive.
Widespread ignorance and myths associated with epilepsy lead to a reduced access to opportunities for people living with epilepsy, such as obtaining health or life insurance, driving licence, annulation of marriage, restricted social activities, school withdrawal and employment opportunities.
Epilepsy is mistakenly considered contagious and a person living with epilepsy and their families often have to face social exclusion because of this misconception. Lack of awareness about how to respond to a seizure may lead to severe disability or death of a patient.
The truth remains that epilepsy can be prevented and treated. Focus needs to be not only on treatment but also on risk reduction, redressal of social stigma and appropriate education of the patient and their family members. Risk factors for epilepsy such as head trauma, poor neo-natal care and infections such as neurocysticercosis can be controlled with the help of appropriate population based strategies.
Lack of trained specialists to treat epilepsy (and other neurological disorders) is a concern but there are simple, cost-effective ways to treat epilepsy in resource-poor settings.
WHO carries out programmes to reduce the treatment gap in developing and low income countries such as WHO Programme on Reducing the Epilepsy Treatment Gap and the mhGAP Mental Health Action Programme.
The programmes aim to reduce the treatment gap by expanding skills of primary care and non-specialist health professionals at the community level to diagnose, treat and follow up people with epilepsy. In India also, training primary healthcare workers to diagnose and start treatment might signifi-cantly reduce the treatment gap and rural-urban disparities.
At the national level, India needs a plan that integrates epilepsy treatment and care into primary health care system, involves risk reduction strategies, focuses on dispelling social stigma, mobilises the community resources to better support people with epilepsy and their families and most importantly safeguard their civil rights. Only then is it possible to ensure a productive and healthy life for people living with epilepsy.
(The writer is Senior Research Associate and Clinical Psychologist at Public Health Foundation of India)