10/02/2025
Did you know today is International ?
It is a day where people are encouraged to talk about , seizure first aid, and epilepsy related deaths.
One of our members from Galway, Lorraine, is an advocate for change and often discusses the stigma that is attached to having epilepsy and seizures. She has lived with seizures since her premature birth and suffers from tonic clonic and complex partial seizures.
Recently Lorraine told us about her experience of living with epilepsy and how her volunteering with the Order of Malta means she can help herself and others like her and shares key information on how to support people living with epilepsy in times of need.
“I joined the Order of Malta at 13 years old. I wanted to learn first aid so that I would be able to treat myself and others. Over the years I have suffered cracked ribs, sprains, black eyes, bloody noses and blood in my mouth, bruises all over my body, temporary vision loss, and loss of awareness and consciousness. The most dangerous time for me can be coming out of a seizure, known as the post-ictal stage. This occurs after the active (ictal) part of the seizure and is the recovery stage and during this phase any physical aftereffects of the seizure are felt. The type of seizure and the part of the brain involved will determine how long it takes for someone to return to their usual self.
For me, I sometimes become (uncharacteristically) aggressive, and I would have no memory of the seizure. For some people when they are post-ictal they may even have their eyes open looking at you and even saying something to you but have no memory of it at all. I, like many, find this very hard as the impact of memory loss can cause additional stress and distress. So it is important for me that everyone knows when you are treating someone during this time the key is to talk calmly to them, reassure them and encourage them to sit or lie down to rest in a safe place, and to drink some water too and stay resting for some time – rest and hydration are essential in the recovery process. One thing I always say is please don’t put your hands on the person unnecessarily if they are speaking to you with a clear airway, as this can be very unsettling, especially as people may be confused in the post-ictal state.
Most people who have epilepsy are reluctant to tell others about their condition, I was one of those people, and then I made a choice to educate others about the most common neurological condition in Ireland. I didn't choose epilepsy, and the formation of my brain was impacted by factors beyond my control. Unlike me, a large percentage of people do not grow up with epilepsy and I was grateful for the diagnosis in childhood due to a diligent teacher who realised that I was “spacing out”.
More people die in Ireland every year from epilepsy than asthma when you take SUDEP into account. Sudden Unexplained Death in an Epileptic Person is often when a person passes away their sleep and there is not always a known reason. Many people do not know about The Epilepsy Deaths Register for Ireland it is a single point for reporting all epilepsy-related deaths, I think it is a vital tool and can tell the stories of those who have passed from SUDEP – it can act as a catalyst for change.
The strength of the Order of Malta is in how much we care for each other and how we make a difference in caring for others. I have been so lucky with the Order of Malta to be surrounded by caring people and I am thankful to all the cadets and volunteers in the Order of Malta who were so supportive of me and my epilepsy, especially those who have cared for me in my time of need.”
Lorraine shared one of her favourite Order of Malta pictures - a photo from Reek Sunday (Climbing Croagh Patrick on the last Sunday in July) with two former cadets who are now doctors, but we also found a more recent picture of Lorraine in Lourdes all great examples of the spirit of the Order of Malta in caring for others!
We are so grateful for Lorraine for sharing her and information about what to do to support people with in need. If you wish to find out more about Lorraine's journey you can do so here:
https://www.youtube.com/watch?v=OYhKMJQ7qZg
You can also find out more about Epilepsy in Ireland and about from https://www.epilepsy.ie/
