Before our son's first seizure, I had a very vague idea of what epilepsy was, or at least, what a tonic clonic seizure looked like. I witnessed a seizure in the school cafeteria as a child and occasionally would see a seizure in films. However, in 2011, our three-year-old had a seizure right as he was going to sleep and suddenly, I needed and wanted to know all about epilepsy! For several years, we travelled the epilepsy journey without the support of others who could relate. Then a friend invited me to the national conference of CMEA in February 2016. From then on, our family had an empathetic community as we faced the ups and downs of living with this very common neurological condition.
Did you know that one in 100 people have epilepsy? It is often a hidden condition, because unless you witness the seizure, you would not know that they have epilepsy. Some seizures, you might not even recognise when you see them, as there are over 40 different types.
To do our part to increase awareness of seizure first aid and epilepsy awareness, CMEA provides free training to everyone from teachers, principals and learning support educators to students studying social care, nursing and medicine, to recruits in the police academy and officers in the community police. We also teach about epilepsy to people in workplaces, social welfare agencies and non-governmental organisations, community care workers in residences for disabled persons and anyone else who is interested. You can find materials online at https://www.caritasmalta.org/cmea/ or request a training session by sending an email on: [email protected].
I am also involved on the European level as I serve as the International Bureau for Epilepsy representative on the European Federation of Neurological Associations Board. As a committee, we our blessed to have our advisor, Professor Janet Mifsud, who gives us knowledgeable and valuable support alongside our president Frank Portelli. Plus, we have a very dedicated group of volunteers that work together to help make "a better life for people with epilepsy in Malta".
February is a special month for raising awareness for epilepsy, with the International Epilepsy Day taking place on 12 February. A highlight on an international level is the recent World Health Organisation's 10-year Intersectoral Global Action Plan on epilepsy and other neurological conditions. Basically, this plan means that in the next 10 years WHO nations will be working to increase the service coverage and promoting and protecting the rights of people with epilepsy. To learn more visit https://internationalepilepsyday.org.
CMEA is also planning a national forum on Saturday, 2 March. The guest speakers include some of our Maltese neurologists, for whom we are grateful, along with Professor Helen Cross, president of the International League Against Epilepsy and Francesca Sofia, president of the International Bureau for Epilepsy. The focus will be on Patient Public Involvement in Epilepsy. It is important that both people with epilepsy and their caregivers work collaboratively with researchers and doctors so that research is done "with or by patients and the public, not to, about, or for them." (https://www.medsci.ox.ac.uk/research/patient-and-public-involvement/section- 2-what-is-patient-and-public-involvement).
CMEA is grateful to have been awarded a grant from the Small Initiatives Support Scheme through the Malta Council for the Voluntary Sector in order to provide this conference free of cost, but places are limited. We are also thankful for the Ministry of Inclusion and Voluntary Organisations for their ongoing support.
If you or someone you know has epilepsy, please reach out to CMEA. Walking through the epilepsy journey with someone who understands makes so much difference. As we say in Maltese, Fl-ghaqda hemm is-sahha or "in unity there is strength".
Caritas Epilepsy Malta are full members of Malta Health Network, www.maltahealthnetwork.org
Robin Pinkston is secretary Caritas Malta Epilepsy Association