“Epilepsy affects one percent of the world’s population, making it one of the more common neurological conditions, which means that in Malta, we estimate that there are between 4,000 and 5,000 people who have this condition,” President of the Caritas Malta Epilepsy Association Frank Portelli explained to Newsbook.com.mt during a press conference held at Caritas Malta.
With the treatment presently available, 30% of all persons with epilepsy remain resistant to treatment.
The Caritas Malta Epilepsy Association (CMEA) holds meetings every two months in the Caritas Malta building in Floriana as it is easy for people with epilepsy to travel to with public transport (people with epilepsy cannot drive, Mr Portelli explained).
During these meetings, professionals in different areas are invited to give talks about their respective subjects. Sometimes these meetings are a means of experience sharing and support seeking. All that is shared during these meetings is treated with the strictest respect and everyone pledges to uphold confidentiality.
“We also give tips on how to live with the condition… for example, if you are cooking, use the back burner of the cooking, not the front one; if you go swimming, don’t go alone,” Mr Portelli continued.
During the press conference, the CMEA also announced that its National Epilepsy Conference will held on 14th March 2020 with the theme Epilepsy: What’s new?
The conference will discuss the latest developments in the treatment of epilepsy. The keynote speakers include Prof Helen Cross, The Prince of Wales’s Chair of Childhood Epilepsy; Honorary Consultant in Paediatric Neurology at UCL Institute of Child Health; Great Ormond Street Hospital for Children NHS Trust, London and Galia Wilson, Dravet Association, UK. There will also be several local speakers and interactive workshops.
Anthony Gatt, Director Caritas Malta, explained that CMEA is one of the many services with Caritas Malta offers. The Caritas Malta Epilepsy Association (CMEA) was set up by voluntary workers in 1996 and now lists almost 400 members. In May 2001 the Association was accepted as a Full Member of the International Bureau for Epilepsy (IBE) and registered as a VO in 2017.
The association is for persons with epilepsy and their families and aims to promote education and local awareness about epilepsy, especially because of the stigma suffered by people with this condition in society, particularly in employment. Its campaign is aimed at improving health care services, treatment and social acceptance of epilepsy, as a serious yet treatable brain disorder. The the association has held various national conferences.
Prof Janet Mifsud, Department of Clinical Pharmacology and Therapeutics, University of Malta and Advisor, Caritas Malta Epilepsy Association explained that epilepsy is a neurological disorder which affects the brain. It is a tendency to have repeated seizures. It is estimated that 65 million people are living with epilepsy around the world. In Malta it is estimated that around 4000 persons have epilepsy. There are over 40 different types of epilepsy and it affects all ages.
CMEA has participated in several projects, most recently an Erasmus + project (2017-2019) EPIPICTO: A pictorial guide for persons with epilepsy with partners from Scotland, Netherlands, Austria and Germany and a PEKTUR grant from CRPD on the development of a toolkit in epilepsy.
It regularly organises training course on epilepsy for those who request their services: social workers, care workers, educators, police officers, health care professionals.
For information about the conference and epilepsy support in Malta please contact CMEA on firstname.lastname@example.org. The programme and registration form can be found here.