Mongolian Epilepsy Association – Mongolia
Project: Quality of Life Program—improving public knowledge of epilepsy in Mongolia

In 2006 the Mongolian Epilepsy Association initiated a “Quality of Life” program to improve health education on epilepsy with the cooperation of the 1st Clinical Hospital of Mongolia, the Centre of Psychiatry and Narcology, the medical centres of Ulaanbaatar district and the Young Neurologist Student’s Club.

The objective of this activity is to conduct health education on epilepsy care among neurologists of districts hospitals, family doctors, nurses, people with epilepsy and their family members, and also to the public and local government officials. We have successfully implemented the 1st and 2nd “Quality of Life” program in two cities near Ulaanbaatar. This was financed purely from the private pockets of our enthusiastic doctors. In order to continue implementing the educational program successfully in the future we needed financial support and assistance. By participating in the promising strategies program we now have a good opportunity to improve the education for epilepsy and to provide better care of our support groups and the general public.

Mongolia is a developing country, with an urgent need to develop and improve health care and health education for people with epilepsy as well as for doctors and their family members. According to the national health statistical data of 2003 and 2004, the number of people with epilepsy increased by over 800 in 2003 and 779 in 2004 respectively, making the total of 7,433 people with epilepsy, which means an annual increase by more than 10%. The major cause for the epilepsy is trauma. It’s a preventable cause. This is a very important point to educate the public about.

Some of the problems we face include:

• In Mongolia, social stigma for people with epilepsy is huge, and people with epilepsy are afraid of being in public, reducing their changes of receiving a good education or getting employment. Few people with epilepsy are employed.
• People with epilepsy do not get support from the Government for their epilepsy care.
• Lack of EEG machines and other basic tools and devices for doctors in rural areas. People with epilepsy must travel all the way to Ulaanbaatar city to receive an EEG diagnosis and to get AEDs, sometimes travelling 2000 kilometers to reach the captial. Transportation costs are high, compared to income in Mongolia.
• Insufficient supply and high costs of AEDs are serious problems.
• Herdsmen don’t live in fixed settlement and have to move every season from one place to another. Herdsmen need to travel sometimes 100 kilometers on horse to receive primary medical care. Climatic conditions in our country are too harsh with severely cold winters and dry and hot summers.
• All of the above makes it very difficult for herdsmen to receive prompt medical assistance.
• To improve these conditions, it is first necessary to improve public education and to reverse stigma in order to improve the quality of life of people with epilepsy and their families.
• In rural areas there is no EEG machine and there is an urgent need for a portable EEG for the Quality of Life program in each city, in order to help the local doctor to make a diagnosis.
• In the case of Mongolia, there is a need to improve health education on epilepsy and the level of care for people with epilepsy; to promote prevention activities; to provide health services for people affected by epilepsy and to involve them in normal social activities.

Project objectives:

• To increase public and professional awareness of epilepsy as a universal treatable brain disorder;
• To conduct research and health education among neurologists in district and province hospitals, family doctors, nurses, people with epilepsy and their family members on epilepsy care;
• To identify the needs of people with epilepsy in Ulaanbaatar and at national level;
• To encourage governments and departments of health to address the needs of people with epilepsy, including awareness, education, diagnosis, treatment, care, services and prevention;
• To produce and publish handouts on epilepsy care and prevention of epilepsy for doctors as well as for patients with epilepsy their families;
• To improving epilepsy diagnosis by using mobile EEG tools in rural area.