Many families who have lost loved ones to epilepsy were not aware prior to the death that this neurological condition can be fatal, new research has found.

According to new data from the International Epilepsy Deaths Register (EDR), which includes the recently established Epilepsy Deaths Register for Ireland, over half of families who have lost someone to epilepsy were not aware that the condition can be fatal.

The data was released as part of International SUDEP (Sudden Unexpected Death in Epilepsy) Awareness Day (October 23). SUDEP is when a person with epilepsy dies suddenly and prematurely and no other cause of death can be found. It most commonly occurs in young adults, particularly men.

Epilepsy Ireland estimates that there are up to 130 epilepsy-related deaths in Ireland each year and that about half are due to SUDEP. Other deaths are caused by prolonged seizures, accidents, injuries and drowning.

The International EDR was established to learn more about the reasons why people die from epilepsy. Data from over 500 deaths in Ireland, the UK and the US revealed that 56% of families did not know that a person could die from epilepsy prior to the death of their loved one.

Meanwhile, 61% of families felt that the circumstances of their loved one's death were not adequately explained at the time.

"Over half felt that SUDEP had not been adequately explained, which was one of the most revealing aspects of the data. Helpful explanations came from a variety of sources including GPs, Epilepsy Ireland, pathologists and coroners.

"There was strong agreement that it was helpful for bereaved families to talk to someone and to know more about epilepsy-related death. Many families found it a positive experience to give details about the death of a loved one because they are sure that this information will be of help in reducing the risk to others," commented expert advisor to the EDR, Prof Henry Smithson, of University College Cork.

Also speaking about the data, Epilepsy Ireland CEO, Peter Murphy, said that these findings show that raising awareness is vital.

"It is still often incorrectly assumed that epilepsy is a benign condition, even by people with epilepsy and their families. However, many Irish families have experienced the devastation of SUDEP and are keen to raise publicity to avoid further untimely deaths.

"The risk of SUDEP is comparatively low, at about 1 in 1,000 each year, but it varies from person to person depending on their epilepsy. Importantly, the risk is modifiable, so it is important to discuss your risk with your medical team," Mr Murphy said.

The best way of reducing the risk of SUDEP is by becoming seizure free and there are a number of steps people can take to try to achieve this:

-Medication should be taken on time and as prescribed
-Have regular reviews with your doctor
-Inform your doctor if your seizures have changed
-Try to identify and manage seizure triggers
-Discuss lifestyle changes with your doctor, such as having a baby
-Do not drink alcohol excessively or take recreational drugs
-If your medication does not appear to be working and seizures are continuing, ask your doctor about other options.

Last year, Epilepsy Ireland partnered with the UK charity SUDEP Action, UCC and Sheffield University to set up the Epilepsy Deaths Register for Ireland. It is linked in with similar registers in the UK and elsewhere. Families who have lost a loved one to epilepsy are invited to submit details of their bereavement online here