This Sunday (October 23rd) is International SUDEP Awareness Day and new data from the International Epilepsy Deaths Register (EDR), which includes the recently established Epilepsy Deaths Register for Ireland, has revealed that over half of the families who have lost a loved one to epilepsy were not aware that epilepsy can be fatal.
International SUDEP Awareness Day is dedicated to raising awareness of Sudden Unexpected Death in Epilepsy and other epilepsy deaths across the world. SUDEP is when a person with epilepsy dies suddenly and prematurely and no other cause of death is found. Tragically, it is most common in young adults, particularly men. The cause of SUDEP is still not fully understood but may be due to a failure of cardiac, respiratory and autonomic systems. 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 set up to learn more about the reasons why people may die from epilepsy and to drive research in how risks can be reduced by providing an opportunity for families or professionals to register a death from epilepsy.
Data from 527 registered deaths from Ireland, Britain and America reveals:
- 56% of participating families did not know that you could die of epilepsy
- 20% of those that died from SUDEP may have forgotten to take their epilepsy medication in the days before they died
- 61% of families felt that the circumstances of death had not been adequately explained
Expert Advisor to the EDR, Professor Henry Smithson of University College Cork said: "Over half felt that SUDEP had not been adequately explained, which was one of the most revealing aspects of the report. 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."
Speaking about SUDEP, Epilepsy Ireland CEO, Peter Murphy said: "The key message from the new data is one of raising awareness. 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 p.a. but it varies from person to person depending on their epilepsy. Importantly, the risk is modifiable, so it important to discuss your risk with your medical team."
Becoming seizure-free is the best way of reducing the risk of SUDEP and there are a number of steps that people with epilepsy can take:
- Taking your medication on time and as prescribed.
- Make sure you have regular reviews and speak to your doctor before making any changes to your medication
- Tell your doctor if your seizures have changed
- Try to identify and manage your seizure triggers. Discuss any lifestyle changes such as having a baby or going to university with your doctor
- Avoid excess alcohol consumption and using recreational drugs
- If your medication isn't working, don't settle for continued seizures. Ask your doctor what other options there might be
In 2015, Epilepsy Ireland partnered with UK charity SUDEP Action, UCC and Sheffield University to set up The Epilepsy Deaths Register for Ireland (www.epilepsydeathsregister.org/ie) which is linked in with similar registers in the UK and elsewhere. Families who have lost a loved one to epilepsy are invited to visit the online register and submit details of their bereavement.
Epilepsy Ireland is the national organisation supporting and representing people with epilepsy, their families and carers. Established in 1966, the charity provides a wide range of support and information services from head office in Dublin and from nine locations around the country. The charity also provides training programmes for both health professionals and for young adults with epilepsy; actively works to improve public understanding of epilepsy and funds high quality Irish research into the condition.
SUDEP Awareness Day is organised by SUDEP Action UK. The first organisation in the world to advocate for action against epilepsy-related death, it provides online information and resources for international access. For more information, visit www.sudepawarenessday.org.
For further information or to arrange an interview, contact:
Conor Culkin, Communications Officer