Shunglon Lai, IBE Vice President Western Pacific recounts his visit to Mongolia

Background

Epilepsy is a common and serious neurological disorder and one of the world’s most prevalent non communicable diseases. It is estimated that the condition affects 50 million people, most of whom are living in developing countries with limited medical and financial resources, and who receive either inadequate diagnosis and treatment or no treatment at all. Consequently, in the context of large and rapidly increasing populations in developing countries, epilepsy is a significant health and socioeconomic burden requiring urgent attention. The reported prevalence rates of active epilepsy in developing countries range from 5 to 10 per 1000 people.

International organizations, such as IBE, ILAE and the WHO have been successfully working for many years in order to solve the existing problems related to epilepsy; however many serious problems still exist. In IBE’s current membership in the Western Pacific region, Mongolia is still a developing country. The GDP of Mongolia in 2003 was reported to be US$1,800 per person.

Epilepsy in Mongolia

According to Mongolian national health data for 2003 and 2004, it is estimated that the number of persons with epilepsy increased by over 800 in 2003 and by 779 in 2004 respectively making a total of 7,433 identified persons with epilepsy, giving an annual increase of more than 10%. In considering the above, it is evident that there is a rising need to study the prevalence of epilepsy in Mongolia in more detail in order to measure the accuracy of the above estimated data, the reasons for such a sharp increase, and to work out programs and actions for coping with this phenomenon.

“Quality of life” program

On June 17th, the Epilepsy Center of Mongolia, Mongolia Epilepsy Association (MEA) and Mongolia Epilepsy Society (MES), in cooperation with the 1st Clinical Hospital of Mongolia, Center of Psychiatry and Narcology, set up a charitable program in the capital city’s district medical centers and in the Young Neurologist student’s club, under the banner of “Quality of Life”, aimed at improving health education on epilepsy in the population. The objectives of this action are:

• To increase the public and professional awareness of epilepsy as a universal treatable brain disorder.
• To conduct the research and health education among neurologists in district hospitals, family doctors, nurses, people with epilepsy and their family members on epilepsy care.
• To identify the needs of people with epilepsy at city and national level.

• To encourage the government and departments of health to address the needs of people with epilepsy, including awareness, education, diagnosis, treatment, care, services and prevention.

The program in one district consists of 3 to 4 lectures presented by well known doctors; the provision of training on epilepsy for nurses; and a cultural program showing the life of people with epilepsy organized by the Young Neurologists Student Club that used live drama and also documentary films provided to MES by the Taiwan Epilepsy Association.
In addition to this, the doctors provided a Question & Answer session, replying to questions raised by the public. At the end of the programme certificates were presented to local doctors and nurses who had undertaken the training program.
The first stage of the project will involve 9 districts (6 within the boundaries of the capital, and others at a distance of up to 130 km from Ulaanbaatar.

In the second stage of the project, we are planning to cover all Mongolia, involving 21 provinces. This part of the project is now being planned and its implementation will depend on availability of finance.

First Results

As a pilot program, the Mongolian association has successfully introduced the one-day program in a satellite district of Ulaanbaatar, called Nalaih, and also organized a Information Day under the auspices of the Ministry of Health on Ulaanbaatar’s central square. All of the capital city’s medical institutions took part in the event, providing information on the services they provided, in order to increase public awareness that epilepsy is a universal treatable brain disorder.

Despite the fact that the Mongolian association is ready and eager to go to other districts to achieve its objective, this has not been possible due to a lack of financial resources; the aforementioned action in the Nalaih district was financed purely from the private pockets of Mongolia’s enthusiastic doctors. The association is now looking for financial assistance from international organisations to allow them to move forward with the initiative.

Visit to Mongolia

As IBE Vice President Western Pacific, I accepted an invitation to travel to Mongolia and to be involved in the 2nd phase of the ‘Quality of Life’ program, which was to take place in Zuun Mod, a city in the central province of Mongolia.

On my first day in Mongolia I met the President of the Mongolian Epilepsy Association, Dr A. Tovuudori, in Ulaanbaatar and we visited the capital’s health professionals and the President of the university to discuss the efforts being made to promote the care of people with epilepsy.

The next day I attended the training program, which is broken into a morning and afternoon session. The morning session is intended for doctors and professionals allied to medicine and was attended by hospital managers, doctors, nurses and healthcare workers. The subjects covered included:

• Prevalence of epilepsy in the region
• Diagnosis of epilepsy
• Status of epilepsy care and AED treatment in Mongolia
• Status of epilepsy care worldwide

• Question and Answer Session.

The afternoon is give over to providing training and information for people with epilepsy and their carers and was also attended by doctors and health workers. The themes covered were:

• Cultural performance
• Seizures, their causes, risk factors, and prevention
• Epilepsy in children, symptoms and prevention
• Presentation of Taiwan CD about epilepsy
• Questions and Answers

• Presentation of certificates.

During my time in Zuun Mod, Dr Tovuudorj introduced me to the local Head of Healthcare Dr D Ochirbat and the Head of Hospital, Dr B Doljinsuren. We discussed local conditions for people with epilepsy, including the lack of an EEG machine and AEDs.

In her report presented to the training programme, Dr. J. Byambajav, Head of Neurology at the regional hospital, stated that in the Zuun Mod area, with population of 88,000, there are currently 133 cases of epilepsy diagnosed. The most common etiology is trauma (over 50%). The city doesn’t have an EEG machine and diagnosis is purely on the basis of case notes. Only 5 of those diagnosed had the chance to receive treatment. The only drug is carbamazepine. This is the reality for people with epilepsy in Zuun Mod.

I discussed IBE’s new Promising Strategy Program with Tovuudori, a program aimed at improving the quality of life for people with epilepsy in developing regions through the provision of funding on a limited basis. This was an opportunity for the association to obtain some financial support to continue with the ’Quality of Life’ program.

After the afternoon session, I provided EEGs for those requesting it, using my portable EEG machine. Using the EEG machine, the resulting diagnosis was often different to that provided through case-taking alone, and some generalized seizures could be partial seizure with secondarily generalization.

Personal observations

Members of Mongolia Epilepsy Society who have epilepsy are often faced with the lack of diagnostic tools, treatment and treatment options.

• Doctors are very eager to improve their diagnostic skills and hope to get the drugs for their patients.
• From the drama enacted by the students, it is evident that stigma is still big in Mongolia.
• Trauma is a preventable cause of epilepsy, the health education system might need to stress the procedure to reduce head injuries.

Personal proposals

The association submitted a proposal to the Promising Strategies Program and, if successful, this will assist the ‘Quality of Life’ program.

I will submit a proposal to my hospital for financial support for portable EEG machines, drugs, and for personnel training for their medical professionals. If accepted, I hope the proposal will come under the guidance of IBE and Global Campaign Against Epilepsy.