Fact: One in 115 people have epilepsy
What do Max Clifford, Martin Kemp, musicians Prince and Neil Young, and 2FM presenter Rick O’Shea all have in common? It may surprise you to hear that they are just a few well known people who live with epilepsy.
Epilepsy is the most common serious neurological (brain ) condition not only in Ireland, but worldwide. The recent Prevalence of Epilepsy in Ireland study commissioned by Brainwave found that there are 37,000 people in Ireland over the age of five years with epilepsy.
Based on the 2006 census figures we estimate that there are 823 people (over the age of five ) with epilepsy in County Kilkenny.
As community resource officer for Brainwave – The Irish Epilepsy Association, I meet and support many of the individuals and families whose lives are affected by epilepsy in counties Kilkenny, Carlow, Waterford, Wexford, and South Tipperary. Established in 1966, Brainwave is the national charity that exists to work for and meet the needs of people with epilepsy, their families and carers.
The role of the community resource officer
I started working for Brainwave in Kilkenny in January 2011 and I am based in St Canice’s Hospital, Sion Road, Kilkenny. Mine is a multi-faceted role but a significant aspect of it is being available to offer understanding, to listen to the person, to discuss issues within my competence (this is not a medical service ), to provide information or to access information according to the person’s need.
For people with specifically medical issues to discuss I can refer them to the Brainwave Epilepsy Specialist Nurse Helpline which is available on Monday and Wednesday from 9.30 – 1pm at 01- 455 4133.
The community resource officer offers an outreach service to members of Brainwave and this is an opportunity for them to meet with me on a one-to-one basis.
I also deliver epilepsy awareness presentations to schools, training centres, employers and community groups. We take the opportunity to highlight epilepsy issues whenever possible through the media, and through representations to public bodies and other service providers.
So what is epilepsy?
Epilepsy is a condition characterised by unprovoked seizures involving episodic abnormal electrical activity in the brain. It can affect anyone at any time. Seizures may take many forms, differing from one person to another, and are usually dependent on the part of the brain from which the discharge of electricity originates.
What to do if someone has an epileptic seizure
If the person has an ABSENCE seizure (the person may seem blank for a number of seconds ), you just wait for it to pass and repeat anything he/she has missed.
If a person has a SIMPLE PARTIAL seizure (the person may experience involuntary twitching of a limb or unusual sensations ) and remains conscious, just wait for it to pass. Being understanding and reassuring helps.
If a person has a COMPLEX PARTIAL seizure (the person may start fiddling with clothes or nearby objects ) and is wandering around in a confused state, you may need to guide him away from danger. Do this gently and talk calmly to the person.
For a TONIC-CLONIC seizure, or major convulsion, there are a few things you can do to protect them from injury:
Put something soft under his head to cushion and prevent it from being damaged or cut.
Remove anything he might injure himself on, eg, furniture.
Do not put anything in the person’s mouth.
The impact of epilepsy on a person’s life can vary greatly – as evidenced in the following example:
Living well with epilepsy – Sarah’s story
My name is Sarah. I am 34 and have been living with epilepsy since I was a child. I feel uncomfortable when people say "what a cross to bear" because in a way it is not — I know nothing else.
My life has been adapted around this. I don't drive; I have flexibility in my work, and will always be urban-based to suit those needs. I do not think I would have the quality of life I have today if it were not for my essential, almost unknowingly supportive, family and friends. To them I am a wife, a daughter, a sister, a friend, like any other. The epilepsy is like a character trait which is dealt with when it needs to be and I have my good times and bad.
The biggest impact epilepsy has had on my life is in recent years, helping other people in my life deal with it. One of the most difficult aspects is to watch a child stand there stunned, frightened, as you recover consciousness after a seizure. It becomes far less frightening if you chat about it, inform them, train them even and keep contact numbers in a central place so they don't feel alone.
I have a vivid recollection of living in Dublin years ago, after a handful of bad seizures in a row. I hid in my apartment too afraid to go to the shop. I shook myself out of it and marched out to buy some milk after realising that this was simply not an option. If I did not go, I would begin to be afraid to do many things and life would become quite miserable. While it is true that you must be careful when you have epilepsy, that does not mean you cannot avail of opportunities and enjoy life.
Further information
If you have epilepsy, or know someone who has epilepsy, you will probably know that epilepsy awareness among people not directly affected by the condition is insufficient, often leading to misunderstanding, stigma, and discrimination.
If you would like further information or support in relation to any of the above issues contact me at 056 7784496 Mon – Wed from 10 – 6pm and Thurs from 10 – 1pm, or email southeast.brainwave@epilepsy.ie, or for more general information log on to www.epilepsy.ie You can also follow Brainwave on Facebook and Twitter.
Thanks to Mary Teehan, Kilkenny, for her contribution to this article.
