“I was sixteen when I had my first seizure. It was Christmas Day. I was playing a board game with my brother when I stood up, got a funny look on my face and fell down, taking the tree with me.” It may sound funny but epilepsy is no laughing matter and the experience of popular 2FM DJ Rick O’Shea is not uncommon amongst the 40,000 people throughout Ireland for whom epilepsy is a part of life

Rick, pictured above, admits that when he had his first epileptic seizure at the age of sixteen he was initially dumbfounded and fearful. “I was terrified of how it would affect the rest of my life. Was it going to change everything? But I decided it wasn’t. You have to make decisions as if you do not have epilepsy. You can only deal with seizures when you get them,” he says.

Rick was speaking to ‘NewsFour’ a short time after he decided to become patron of Brainwave, The Irish Epilepsy Association’s organisation. He clearly realises the importance of positive role models for children, especially those with a medical condition and is adamant that ‘going public’ was a decision he doesn’t regret. “It was one of the best things I’ve ever done,” he says without hesitation. “I’ve had epilepsy since I was a teenager and it’s an honour to be able to help Brainwave in shedding a little light on the condition and why it doesn’t have to stop you from leading a full, successful life. I’ve always been upfront about it and it was a really empowering thing to become involved in this campaign. It was a way of turning this into something really positive.”

Following his diagnosis Rick had seizures every six months to a year. He did experience a welcome seizure-free period of six to seven years during his twenties before his seizures returned every 18 to 24 months.

He has been on anti-epileptic drugs (AEDs) since his diagnosis and says he is happy to continue treatment as long as it controls his seizures. He does, however, acknowledge that lifestyle factors can also affect the possibility of seizures. “Some people have very specific triggers, such as strobe lighting or stress. However, I’ve had loads of tests done and doctors cannot find what triggers my seizures. Stress can be a trigger factor. However, some people may feel they have to hide the condition, which can make them stressed-out, triggering the seizure. It’s a vicious cycle,” he points out.

Evidently, it is possible to live a fulfilled life with epilepsy, but how does it impact on one’s working environment? This, says Rick, is always a concern. “That is one of the most common questions Brainwave gets asked by people: what should I do? Should I tell my employer?”

He himself has always been open with his employers about his condition and they have been accepting and understanding at all times. He has only ever had one seizure in work. “Thankfully I’ve always had employers who have been understanding and rational in their treatment of my condition. Brainwave and I hope that by me speaking publicly as someone who has had epilepsy all my adult life I’ll answer a few questions that people might have with regards to it in their own daily dealings,” he says.

Those with epilepsy are advised to enclose a letter from their doctor in their job application, stressing their ability to do the work or write a short explanation of their current situation regarding their condition. This, they say, may allow the applicant to experience peace of mind because the employer will know about the condition from the beginning– but there is potential for discrimination.

Applicants may not be called for interview if an employer has misconceptions or lack of knowledge about the condition. It is a difficult situation because if applicants do not disclose their condition it could lead to distrust with the employer if they feel that they were not honest with them in the beginning. They may fear epilepsy as something to be hidden.

For many, the situation can also spell restrictions on their freedom to get behind the wheel of a vehicle. As things stand, an individual must be seizure-free for a minimum of twelve months before being permitted to drive. After that period, a neurologist will certify that they can drive. As Rick’s seizures have been irregular, he has had to give up driving a number of times.

Approximately 40,000 people in Ireland have epilepsy yet it is a condition often accompanied with stigma and fear because of the way in which it manifests itself in seizures. For many the implications of living with epilepsy are enormous, with the impact the condition has on their day-to-day lives, affecting their employment, their driving, relationships, education and even social life.

While careful monitoring and medication can control seizures to a certain extent, the fear of having a seizure can be constant. Educating friends, schoolmates, colleagues and family members of people with epilepsy about the condition is a challenge that Brainwave wishes to tackle head on with Rick’s help.

For his part, Rick has always been open about the fact that he has the condition and he readily acknowledges the fact that witnessing someone collapse and have a seizure can be just as traumatic as having one! He once had a seizure in front of a group of friends in the library and admits this was probably terrifying for them as they had never seen a seizure before.

The decision to seek out a well-known patron for Brainwave, the Irish Epilepsy Association was taken by Chief Executive Officer Mike Glynn who was delighted with Rick’s willingness to become involved. “Epilepsy can be a frightening and mystifying prospect for anyone, particularly children,” says Mike. “Having Rick come forward and become a patron is a great boost for Irish people with epilepsy. He can help show those with the condition that epilepsy need not stand in the way of a successful and fulfilling life.”

As someone who deals with day-to-day queries regarding epilepsy and its impact on every-day life on a regular basis, Mike has found that with regard to employment issues, people still have problems. “The whole area of disclosure/ non-disclosure of one’s epilepsy to an employer is a very tricky situation and this is probably the area of employment where we get most requests,” he said.

In recognising epilepsy and the workplace as a serious issue, Brainwave instigated a unique Pre-employment Training Programme for people with epilepsy run in partnership with the Institute of Technology, Sligo. Training for Success was first established in 1998 as part of a HORIZON project, the aim of which is to address the needs of young adults with epilepsy in accessing meaningful employment.

In developing the course, Brainwave adopted a holistic approach, which focuses on two main areas– Career Planning & Development and Personal Development. Training. Students receive a FÁS Training Allowance equivalent to their social welfare payment plus a Training Bonus.

Many people with epilepsy experience an underlying damage to confidence and self-image. The training and education of young people with epilepsy focuses on empowerment and enables the individual to break the ‘vicious cycle’ of dependency.

Paul Sharkey, National Training and Communications Manager with Brainwave, is responsible for the Training for Success programme and runs an Employment service for both members and employers.

For anyone who has epilepsy and would like more information on entitlement or employment issues in general you can write to Brainwave, The Irish Epilepsy Association, at 249 Crumlin Road, Dublin 12 or log onto www.epilepsy.ie for further details.