A first global report on epilepsy from the World Health Organization (WHO) has painted a grim picture on the status of the people suffering with the condition with most of them not getting the low-cost care-as low as USD 5 per year per patients-they need.
This could lead to a “significantly higher” risk of death among sufferers than in industrialized nations, it further said.
The WHO estimates that more than 50 million people worldwide have epilepsy. According to rough estimates there may be about 12 million people with epilepsy in India, making it to almost one sixth of the global burden. Around 14 people per 1,000 populations are prone to suffer from epilepsy in India with higher estimates in children and young adults, and in rural areas.
Epilepsy is caused by childbirth trauma, brain infection or injury and stroke. Mired with stigma and unawareness, and despite the fact that it is one of the most common neurological diseases, affecting one in 200 people, epilepsy has, no wonder, remained out of bound of proper care.
In fact, not only medicines, there are not enough specialist medical professionals in the sector. In some countries, there is only one specialist neurosurgeon per million inhabitants, hence the push for treatment to be delivered through community health centres, said Dr Tarun Dua, from WHO’s Department of Mental Health and Substance Abuse.
“The treatment gap for epilepsy is unacceptably high,” she said, amid evidence that almost a quarter of epilepsy cases are preventable. “We know that 70 per cent of people with the condition can be seizure-free when they have access to medicines that … can be delivered through primary health systems.”
Because of abnormal electrical activity in the brain, sufferers can experience seizures or unusual behaviour, sensations and sometimes loss of consciousness. Among the many misconceptions surrounding the disease is the mistaken belief that it is contagious, which partly explains why many sufferers are shunned and why they have a “feeling of disgrace”, Dr Dua said. This stigma is present in all countries, including the United Kingdom, France and Switzerland, she noted.
“I call epilepsy a neglected disease because no-one wants to talk about it,” Dr Dua added.
In the workplace, it means that when someone has an epileptic attack, “suddenly there is a crisis and you don’t know what to do about it”, the WHO official cautioned, while also dismissing the erroneous belief that “if you play with a child with epilepsy, your child will get epilepsy”, or that sufferers are insane.
In low and middle-income countries, the WHO report — produced with non-governmental organizations including the International League Against Epilepsy and the International Bureau for Epilepsy — states that in addition to shortages of medicine, sufferers die prematurely because of lack of access to professional care following seizures, as well as other preventable causes, such as drowning, head injuries and burns.
Meanwhile, in a good news to the patients, scientists of FutureNeuro and Royal College of Surgeons in Ireland (RCSI) have discovered a pattern of molecules that appear in the blood before seizures, which may lead to the development of an early warning system for epilepsy patients.
These molecules are fragments of transfer RNAs (tRNAs), a chemical closely related to DNA that performs an important role in building proteins within the cell. As per researchers involved in this study, which was published in the ‘Journal of Clinical Investigation’, tRNAs are cut into fragments when cells are stressed. Higher levels of the fragments in the blood could reflect that brain cells are under stress in the build-up to a seizure event.
