When I was young, I witnessed a student at my school having a seizure in the cafeteria. The teachers had us leave the area, and rightfully so, but I recall being scared at seeing the person shaking on the ground. Years later as a parent of a two-year-old boy, I was even more frightened to find him shaking in bed. This began a whole new chapter of my life as the mother of a child with epilepsy.

In Malta there are over 4,000 people who have epilepsy, an often "hidden" neurological condition where nerve cells misfire, causing temporary disruptions in brain function. Many times, you would not recognise that a person had epilepsy unless you saw them having a seizure. It is the third most common neurological disorder (following stroke and dementia), and it affects one in 100 people. There are many varying impacts, from the different types of seizures themselves to the social and personal struggles that accompany the challenge of not knowing when a seizure may occur. Almost every person will experience at least one seizure in their lifetime, but epilepsy is diagnosed when there are two or more unprovoked seizures. There are dozens of types and degrees of seizures, from the tonic-clonic seizure, where a person may lose consciousness and shake their arms and legs, to absence seizures, where a person may "freeze" for a second up to a few minutes. Up to 70% of people with epilepsy will gain control over the seizures with the correct medication, but there is often quite a lengthy trial time to achieve this. Technology is helping, with apps and wrist alarm systems that alert caregivers when seizures occur.

My son is now a university student in the USA and has been seizure and medicine free for over three years, for which our family is very grateful to the Lord. However, there were many tough days on the journey. He grew up with regular hospital and doctor visits and the occasional ambulance ride after seizures at school. It also affected his older brother and sister's lives too, as they helped watch out for him and as the appointments required extra time. One of the most challenging aspects for our family was trying to find the balance between being prepared and yet allowing him to experience normal, everyday experiences such as climbing tall slides and even cliffsides, or going swimming, always with someone watching him nearby. There was a season when schooling became challenging due to side effects from his medication. He also experienced Psychological Non-Epileptic Seizures (PNES), a condition where the body mimics seizure type activity as a stress response.

Through all of these trying times, our family found comfort in knowing that God created him and has good plans for him. We also found support in our friends at the Caritas Malta Epilepsy Association (CMEA). Speaking with someone who understands the anxiety that comes with parenting a child with epilepsy, or meeting people with epilepsy who could explain how it affected them was helpful. I began volunteering to do training in schools and assist with secretarial work because I witnessed firsthand the lack of awareness that many times led to stigma towards people with epilepsy.

Perhaps epilepsy already affects your life or the life of a loved one. You are invited to connect with CMEA.

In celebration of the International Epilepsy Day on 9 February, there was a Kite Flying event near Triton Fountain on Saturday, 7 February from 10am to 1pm. Also, the national conference was at Caritas Community Centre on Saturday, 21 March, titled Enhancing the quality of life in Epilepsy. We were honoured that the conference was opened by her H.E. Myriam Spiteri Debono, President of Malta. Among the speakers was Prof. Gus Baker, University of Liverpool, UK and secretary general International Bureau for Epilepsy, and distinguished local guests, alongside an interactive session.

Through events like this, CMEA continues its mission to educate, support, and empower individuals and families affected by epilepsy in Malta.

For more information, to be added to our newsletter, or to inquire about our free educational sessions for your school or workplace, contact us at [email protected].

Robin Pinkston is secretary of the Caritas Malta Epilepsy Association

Caritas Malta Epilepsy Association are full members of Malta Health Network www.maltahealthnetwork.org