Epigraph Vol. 13 Issue 1, Winter 2011
National Epilepsy Day in Croatia
Based on the mission statement and the "Global Campaign Against Epilepsy – Out of the Shadows", which has been a joint project of the ILAE, IBE and WHO since 1997, the Zagreb Epilepsy Center initiated the creation of a National Epilepsy Day in Croatia. In this initiative we were joined by Ms Vita Loncar (shown in photo at right), a very successful Croatian actress who has epilepsy and openly talked about living with the disease.
National Epilepsy Day was first approved by the Government of the Republic of Croatia and then unanimously accepted by 113 votes by the Croatian Parliament who proclaimed National Epilepsy day on 17 October 2008. The Croatian Parliament statement expresses appreciation and understanding towards persons with epilepsy: “The National Epilepsy Day will help change attitudes towards persons with epilepsy, but also to change perception of the Society towards this disorder …”.
At the first celebration of the National Epilepsy Day in 2009, the Zagreb Epilepsy Center decided to help other countries in the Region for the same cause. Thus we organized a Regional Round Table and invited ILAE representatives from six neighboring countries: Austria, Slovenia, Bosnia and Herzegovina, Serbia, Montenegro and Macedonia. The topic was “Quality of life of persons with epilepsy in my country”. This first meeting has resulted in the group’s meeting yearly in a different country. The second took place in Montenegro (Prof Vujisic, 2010) and this year it is in Bosnia and Herzegovina (Prof Kapidzic, 2011). Another important goal of these meetings is to improve care for persons with epilepsy in these countries. Results are already visible, as since our first meeting four countries – Bosnia and Herzegovina, Macedonia, Montenegro and Kosovo bought their first video/EEG machines for long-term monitoring. In addition Zagreb Epilepsy Center developed a comprehensive epilepsy surgery program.
Nationwide Survey on Public Knowledge of and Attitudes Toward People with Epilepsy
Prior to starting this initiative, Zagreb Epilepsy Center performed a nationwide survey to assess the level of stigma toward persons with epilepsy among citizens of Croatia. In the survey, we randomly interviewed 1,500 participants. The survey consisted of 14 questions, previously used in other similar studies. THe results were very interesting. Almost half of the respondents treat persons with epilepsy differently (48%). The results also show that 92% of respondents have heard or read about epilepsy. 57% of them are familiar with a person with epilepsy and 55% have witnessed a seizure.
We have found two main predictors for stigmatizing persons with epilepsy. This was an assumption that epilepsy is a mental illness (41%) and that it is an infectious, contagious disease (17%). Every third participant suggested that people with epilepsy should work at lower quality jobs, despite their education and 17% do not want their son / daughter to live with a person with epilepsy. A surprising number (17%) believed that people with epilepsy should not have children and 12% that they should attend special schools because of their disease.
This was the first study assessing public knowledge of and attitudes toward people with epilepsy in the Croatian population. We showed that public knowledge of epilepsy is similar to other countries, and we defined predictors for negative attitudes. Future educational campaigns on epilepsy should improve attitudes toward epilepsy mainly by targeting misconceptions about epilepsy and by offering opportunities for personal acquaintance with people with epilepsy. Our plan is to repeat the survey five years later, in 2013 to determine if our educational efforts have been successful.
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