AFTER 16 years based in Washington Street, Monday marked Epilepsy Ireland’s first day in our new Cork office in Ballincollig, which also coincided with International Epilepsy Day.
More than 4,600 people have epilepsy in Cork and almost 37,000 people over the age of five have the condition. This makes epilepsy one of the most common neurological conditions but despite its prevalence, it remains a much misunderstood and often stigmatised hidden disability.
The term ‘epilepsy’ is used to describe a group of disorders, all characterised by recurrent unprovoked seizures involving abnormal electrical activity in the brain. Seizures can take many forms, not just convulsions, depending on which part of the brain is affected.
About one in every 20 people will have a seizure at some time during their lives. Epilepsy affects people of all ages, but is more prevalent in children, adolescents and the elderly. It is also more common in people with an intellectual disability. In about 60% of cases, no specific cause can be identified. In the remaining 40% of people, common causes include head injuries, strokes, brain infections, birth defects and genetic conditions like tuberous sclerosis.
Epilepsy Ireland‘s work
As Communications Officer I know accurate information is a crucial part of the organisation’s work since its early beginnings. Epilepsy Ireland was established in 1966 by a group of individuals concerned to improve the quality of life of people with epilepsy. Over the 51 years since our inception, we have grown and expanded and now provide a range of services from headquarters in Dublin and from regional offices in Cork, Dundalk, Galway, Kerry, Kilkenny, Letterkenny, Limerick, Sligo and Tullamore. In Cork, our dedicated team of Niamh Jones, Loretta Kennedy and Judith Kelleher are always available to help people with the condition in both the city and county.
From early achievements like ensuring that epilepsy medications would be covered free of charge under what is now the Long Term Illness Scheme, through to more recent developments such as establishing our regional network, setting up the innovative Training For Success programme and the appointment of Community Epilepsy Nurses, the organisation has a proud track record of delivering services to the highest standards.
Even in the last five years, a difficult time for the country generally and for the voluntary sector in particular, we have developed and grown. Despite fundraising challenges, Epilepsy Ireland have invested almost €1m in Irish epilepsy research, we have introduced a comprehensive set of new services including educational programmes for the newly diagnosed, self-management programmes and a greatly expanded training service. These and other developments have seen a huge demand for our core services in recent years.
In that same time, we have also seen significant improvements in epilepsy care in Ireland, thanks to the work of the National Epilepsy Care Programme and other initiatives. Internationally, epilepsy has been afforded greater priority in arenas such as the European Union and World Health Organization.
The last five years have not been without challenges, however. There are still many issues to be tackled, for example: the growing demand for community services; epilepsy and neurology services still lag behind those available in other European countries; there are significant gaps in how the rights of people with epilepsy and other disabilities are protected and the battle against epilepsy stigma is not yet won.
For the future, we aim to protect and maintain existing services and activities, while also developing in new directions to ensure we continue to meet the needs of our service users and members. It’s not just about what we do, but also how we do it and we are committed to maintaining a sustainable organisation operating under the highest standards of governance, organisational quality and financial management.
Locally, we’re excited about Cork’s new chapter with the opening of the Ballincollig office and it’s significant that the first day is International Epilepsy Day (IED). Awareness is an extremely important aspect to our work and International Epilepsy Day is a great chance to inform the general public about the condition.
Epilepsy Ireland is using the day to focus on the top 5 things to know about the condition, after service users conducted a recent survey. These include: (1) Seizure awareness, (2) Not every seizure involves convulsing, (3) On rare occasions epilepsy can be life threatening, (4) Epilepsy in most cases does not affect your career and (5) Epilepsy doesn’t define who you are.
Locally, we were excited to launch Epilepsy Ireland’s new treatment booklet in the Imperial Hotel, on Monday, which will provide crucial information for the people of Cork and Ireland. Corkonians have been some of our biggest supporters over the years and I hope everyone from the Rebel County will continue support our work long into the future.
The new Cork office is located at Unit 1, 83 Beech Park, Muskerry estate, Ballincollig.
On September 22 Epilepsy Ireland will be holding a fundraising ball in the Fota Island Resort.
For more information log onto www.epilepsy.ie.