SUDEP is not really an issue in Romania; unfortunately not because it does not exist, but because people don’t want it to be an issue. Those who are aware of this phenomenon do not want to bring up the matter and those who should be aware of it, in order to take all the possible precautions, are not.

As far as we know, both GPs and neurologists, are reluctant to discuss the matter with their patients. The main reason is that they find it difficult to raise this rather sombre prospect. Another reason may be that in Romania epilepsy is quite frequently associated with mental retardation and other debilitating illnesses. SUDEP can be very difficult to explain in such cases. As for the patients themselves, it is difficult to say if they would be interested in knowing about SUDEP. We have observed that people with epilepsy in Romania sometimes lack even the most basic information about the disorder. We have also observed that many people with epilepsy do not understand why it would be important for them to know about their own disorder. So it may be fair to say that we should first make people aware of the importance of knowing their own disorder, before they can be interested in knowing about SUDEP.

Until the year 2003, we ourselves were not aware of the existence of such a phenomenon. It was only then that we ‘discovered’ it, accidentally, while doing some research on the internet. It was 2004 when we first learned that in other countries a lot of attention is devoted to this phenomenon and especially to preventing it. Ever since we have been trying to identify such cases in Romania and we have been trying to discover what is the best way to make this a public issue without causing panic amongst the people with epilepsy. We have also been spending a lot of time trying to get funding in order to initiate an awareness campaign regarding SUDEP; and we are still trying. Although we have not been able to make this a public issue, we have been able to inform some of our members about SUDEP.

Our organisation has made a conscious decision to include a SUDEP awareness campaign in a much broader awareness campaign. People with epilepsy in Romania have to be taught the importance of knowing and controlling one’s own disorder, before they can understand the complexity of the SUDEP phenomenon. This is something that we have been working on for the past months and this is one of our most important future directions.

Gelu Stanculesc
President, National Association of People with Epilepsy in Romania

Reprinted with the permission of Epilepsy Australia-the national coalition of Australia epilepsy associations and Epilepsy Bereaved UK.