Knowing epilepsy and the stigma, myths and taboo associated with it

Epilepsy is a disease of the brain characterized by recurrent seizures, which are brief episodes of involuntary movement that may involve a part of the body (partial) or the entire body (generalised)

Know about the myths and facts associated with epilepsy

  • The seizures are sometimes accompanied by loss of consciousness and control of bowel or bladder function.
  • Seizure episodes are a result of excessive electrical discharges in a group of brain cells and can vary from the briefest lapses of attention or muscle jerks to severe and prolonged convulsions.
  • Seizures can also vary in frequency, from less than 1 per year to several per day.

Social impacts: The stigma, myths and taboo

Epilepsy has significant economic implications in terms of healthcare needs, premature death and lost work productivity. People living with epilepsy can be targets of prejudice.

This can discourage people from seeking treatment for symptoms, so as to avoid becoming identified with the disorder.

Although the social effects vary from country to country, the discrimination and social stigma that surround epilepsy worldwide are often more difficult to overcome than the seizures themselves.

Various communities in India continue to perpetuate many myths about epilepsy. Epilepsy is sometimes thought of as a punishment of evil deeds or the breaking of certain taboos.

The strange behaviours caused by some forms of epilepsy have led to a common rural belief that epilepsy is due to “possession by spirits”. Even in urban areas, there are several misconceptions about epilepsy which hinder patients from either getting effective treatment or appropriate support from their families.

As a result, the treatment gap in India ranges anywhere between 22% in some of the metros to 95% in the disadvantaged segments and rural populations.

Neurologist Dr Rahul Kulkarni said that there is a direct correlation between knowledge and attitude. Right attitude will lead a person to gather more knowledge and would help be more aware. There is a need to create awareness about epilepsy.

While more than 50 per cent of the women with epilepsy are in the reproductive age group there are many questions that arise in the minds of these women including that of fertility, whether the baby will be healthy , whether breast feeding will be possible .

We need to educate that those with epilepsy are same as normal people and can lead a normal life with correct diagnosis and medications. More than 90 per cent of these women may not have any problems . Those with epilepsy generally have low self-esteem and lack in confidence. So what is required is support from the family members

Consultant Epileptologist and Paediatric Neurologist Dr Sandeep Patil  said that epilepsy effects 1 percentage of population in Pune, which is roughly 34,000 patients in Pune.

Out of Which 6,000 thousand children in Pune under the age of 6 years suffer from epilepsy. Reasons for epilepsy could be infection, birth related problems and or head injuries and in some cases genetic.

The overall prevalence of epilepsy is higher in adulthood, but majority of them have onset in childhood before the age of 12 years.  With proper treatment and care epilepsy in children can be treated efficiently with 70-75% children not needing medication and treatment lifelong.

Children with Epilepsy can attend regular school and should be allowed to take part in all regular school activities including sports but under the guidance and permission from doctors.  The teachers and school administration should also be informed.