Bhutan does not have a neurologist or medical specialist to take charge of the treatment of neurological disorders like epilepsy or seizures. Psychiatrists like Dr.Damber Kumar Nirola and Dr. Chencho Dorji champion the diagnosis and treatment of epileptic cases referred to them.
Bhutan Epilepsy Project was initiated in 2012 with a grant money solicited by Dr. Farrah Mateen of Massachusetts General Hospital. The aim of the project is to develop a cutting- edge technology in Bhutanese context for the diagnosis and treatment of epilepsy. This will help the Bhutanese health care workers to develop skills and expertise in the field. The project also aims to educate people about the causes of epilepsy and dispel prevalent myths.
Use of mobile devices to diagnose epilepsy is a favorable option for EEG in Bhutan as more than 90 percent of Bhutan’s population use mobile phones.
BNS reached out to Dr. Farrah Mateen and Dr. Damber Nirola to get more details of the project. According to Dr. Nirola, mobile EEG could be as effective as conventional EEG machines, so that Bhutanese health workers in distant health units can also use the technology to diagnose epilepsy.
Excerpts of the interview–
BNS: What is the prevalence rate of epilepsy and other mental disorders in Bhutan?
Dr.Nirola: A total of 11a90 new cases of epilepsy were seen in all the hospitals of Bhutan in 2016. We have not done any prevalence survey. These are all the cases who came on their own to the hospital to seek help. Generally, worldwide prevalence of epilepsy is 1% of the total population, this means we should have around 7000 cases of epilepsy.
BNS: How is the mobile EEG an effective tool for diagnosis of epilepsy in Bhutan?
Dr. Nirola: Epilepsy diagnosis is mostly done clinically. EEG can be a useful tool to find out the type of epilepsy so that appropriate treatment can be initiated. We have not yet fully evaluated the mobile EEG but during the preliminary study we have found that mobile EEG could be as effective as the conventional EEG machine. Therefore, this could be a very important tool in remote resource constraint places in Bhutan. If our next proposal gets funded we plan to study the mobile EEG further and extend it to the remote areas.
BNS: Can you explain how the epilepsy project is gearing towards achieving its goal?
How long will it go?
Dr. Nirola: The main objective of the epilepsy project is to provide services to people living with epilepsy in Bhutan by all categories of health professionals. Ideally epilepsy is managed by either by a neurologist or an Epileptologist in advanced countries but in our settings all doctors are required to manage. We don’t have a single Neurologist leave alone an Epileptologist.
In our hospitals most adult cases are managed by the Internal Medical specialists or Psychiatrists and the children are managed by Paediatricians.
The other objective is to educate the general population about epilepsy so as to dispel the myths and stigma attached with epilepsy.
The project itself is not time bound but depends on availability of funds. We hope to conduct many more researches to see different aspects of epilepsy in Bhutan. In the mean time we will continue to provide care to the people living with epilepsy.
BNS: Given the traditional and superstition based society, what challenges are faced by health workers in rural Bhutan in diagnosis and treatment?
Dr. Nirola: Main difficulty is to convince the people to seek appropriate help from the health workers. Most people either go to the traditional healers, shamans, or the religious persons for treatment. Every category of these healers proscribe different food items and the treatment aren’t necessarily helpful. People with epilepsy sometimes spend a lot of time seeking help from non-medical professionals and often they sustain injuries and burns due to untreated seizures.
The traditional beliefs that “epilepsy is contagious” is also associated with a lot of stigma. Some of the young people are barred from mixing up with other healthy individuals. In the process many children have to leave schools because of this belief.
To change this age old belief system, in itself, is a big challenge.
BNS: As head of psychiatry department at JDWNRH, how often can you reach to far-flung districts to share knowledge and expertise to local health workers?
Dr. Nirola: I am an employee of Jigme Dorji Wangchuck National Referral Hospital, Thimphu, which is an autonomous hospital now. I don’t get much opportunity to travel to other parts of the country. In my entire career of over 10 years as Psychiatrist, I could just make two visits to the district hospitals. However, epilepsy treatment is taught to the health workers as part of continuing medical education and in the Faculty of Nursing and Public Health under the Khesar Gyalpo University of Medical Sciences of Bhutan. Most health workers can diagnose and treat the most common type of epilepsy, however, it is even difficult for the Medical specialists and Psychiatrists to diagnose and treat the complicated cases.
BNS: How easy or difficult (in terms of budget and human resource) is it to train EEG technicians to read and interpret the epileptic brain images?
Dr. Nirola: It is difficult. In fact we don’t have anyone trained in recording and reporting EEGs.
Dr. Farrah Mateen explains the significance of having such novel technology for countries like Bhutan, where there are no neurologists. Excerpts of interview–
BNS: Could you please tell us more of your association to Bhutan epilepsy project?
Dr. Farrah: In 2012, I wrote a grant with the input of Dr. Chencho Dorji and other collaborators to establish a cohort of people with epilepsy in Bhutan. Since Bhutan is one of several countries that does not have a neurologist, our goal was to allow new services to people with epilepsy in Bhutan including electroencephalogram (EEG), smartphone-based EEG (a novel invention), neurocysticercosis testing, and access to neurologists.
BNS: What is the global picture of prevalence of epilepsy in developed and developing countries? And what of Bhutan?
Dr. Farrah: Epilepsy is a common disorder, affecting 1 or 2 percent of the population. Epilepsy is defined as the tendency to recurrent, unprovoked seizures. The causes of epilepsy are myriad and include genetic causes, history of head trauma, history of infections like neurocysticercosis, and history of stroke. The burden placed on people with epilepsy can be very high. They can feel stigmatized. Their quality of life may be reduced. They may not have access to medications due to distance or lack of knowledge of their own diagnosis. We have found in Bhutan that many people with epilepsy leave school or work. This is unfortunate because it changes people’s lives and it is recognized that seizures can be controlled and epilepsy can be treated. Bhutan is fortunate in that it has a universal health care system. It however would still benefit from more health services for epilepsy including EEG services, access to a neurologist, access to blood level testing for medications, access to testing for neurocysticercosis (a tapeworm that causes epilepsy), and expansion of its medication supply to include newer medications. Epilepsy surgery is becoming possible in some countries, usually wealthier ones. With an epilepsy monitoring unit, people who would benefit from epilepsy could be appropriately selected and become potentially seizure free. We are working carefully on understanding what percentage of people with epilepsy in Bhutan could benefit from advanced epilepsy care.
BNS: Seizures or Epilepsy are often considered as manifestations of demonic subjugation of a person. How does the belief system of Bhutanese hinder in the diagnosis and treatment?
Dr.Farrah: Epilepsy is a treatable condition even if it is not curable. With medications that are free of charge, most people can become seizure free and have a high quality of life. Traditional belief systems are to be respected but I believe that people with epilepsy can receive antiepileptic medications and get better. This alleviates unnecessary suffering and hardship and takes the blame away from the person. People with epilepsy are just like anyone else. It is a brain disorder that relates to the way the nerve cells fire. This disorder is treatable with medications available in Bhutan. The Government has provided these medications and visits to the doctors free. I hope all Bhutanese people with epilepsy take advantage of these services to improve their health.
BNS: The mobile technology has helped a lot, says Dr. Damber Nirola. How does that work to be effective in Bhutanese context of diagnosis?
Dr. Farrah: The mobile technology is a novel “app” design by my collaborators at the Danish Technical University in Copenhagen. Our study was meant to look at the mobile app in a setting without neurologists or regular EEG services. The app is a smartphone based EEG system that connects to a shower cap like hat. The app is open source (free of charge). We have shown that is relatively specific but only modestly sensitive for epileptiform discharges. We are continuing to work on refining the app so it can benefit people with epilepsy worldwide.