I had uncontrolled seizures for many years never realising that people could die from a seizure. Being diagnosed as a child I wasn’t told about the risks of sleep deprivation or high alcohol intake so during my early adulthood years I was doing both, not knowing about the possible consequences. I had frequent seizures but I never considered this to be a serious condition – just something I had to accept.

My seizures were never controlled by medication and there were times that I felt like coming off the 3 or 4 different drugs I was taking; they didn’t seem to help much, but something held me back. I was eventually offered epilepsy surgery and in preparing for the operation I was informed about the risks – including death. This was the first time I had ever thought of that possibility. I considered the risk, but it did not stop me going ahead.

The surgery brought me into contact with different doctors and epilepsy counsellors and for the first time I began to learn about epilepsy. Learning about my condition gave me a sense of confidence and positive self-esteem. Some of the things I discovered about epilepsy and its treatment were not easy to hear, and when a young man I knew through the surgery program subsequently died as the result of a seizure, the issue of death really hit home. However, I don’t live in fear of death. Now I know about epilepsy I make choices to take care of myself. I strongly believe people have the right to know about all aspects of their condition.

Now, working as an epilepsy counsellor, I often speak with people who are newly diagnosed. For many, the decision to take medication is a huge one. If they are not aware of the dangers of seizures as well as the side-effects of medication I do not feel that their decisions are truly informed. Informing patients does not mean simply labelling their condition and giving them a list of risks. They need a broad base of information so they can put the risks into context. The information needs to be clear and people must feel comfortable to ask all their questions without feeling foolish. This takes time and understanding.

Maree Kearton, Client Services Counsellor
Epilepsy Foundation of Victoria, Australia

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