Out of the shadows
Epilepsy is now twice as common as diabetes in Ireland, and one in 10 of us will at least experience a mild seizure in our lives -- yet the isolating illness rarely makes the headlines
Peter Phelan underwent epilepsy surgery in May in a bid to reduce his seizures
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Monday August 03 2009
Thirty-seven thousand. That's the number of reported swine-flu cases in the US last month. Closer to home, 37,000 is the estimated number of people in Ireland who have epilepsy, a chronic neurological disorder.
While one in 10 of us will have a single seizure some time in our lives, that doesn't necessarily mean we have the condition.
"In order to give a clinical diagnosis, seizures must be unprovoked and recurrent," says Colin Doherty, consultant neurologist at St James' Hospital in Dublin.
It is essentially a young person's disorder, with peak times for diagnosis being five to 12 years and middle adolescence to mid-20s. However, it can also manifest in later life, secondary to some other ailment.
"The majority will have seizures over a nine- to 10-year span, after which it may go into remission," explains Colin. "For others, it lasts a lifetime."
Despite the fact that epilepsy is now twice as common as diabetes, it rarely makes the headlines, so it was refreshing when the musician Prince recently decided to talk publicly for the first time about the epileptic seizures he suffered from as a child.
Given the low profile of the disorder, it's no surprise that while there's a lot of discussion about sudden adult death syndrome there's rarely a whisper about the fact that it's 24 times more likely to happen to someone with epilepsy.
"It's likely that, in some cases, the brain inadvertently sends catastrophic messages to the heart that stop it beating and cause death," explains Dr Doherty.
"The fact that sudden unexpected death happens in epilepsy has been largely ignored by the many who think it's solely a cardiac problem, and tackle it by supplying cardiac defibrillators for sports clubs.
"The reality is that SUDEP (sudden unexpected death in epilepsy) may well be responsible for a significant number of deaths per year in Ireland."
The complexity of the disorder becomes apparent when you consider that 30pc experience breakthrough seizures despite being on medication, and that five per cent have a form which can give rise to 10 minor seizures per day or more, manifesting in tiny drops in consciousness and blank stares.
Experts
Despite the prevalence of epilepsy here, we have only one neurologist per 200,000 people, compared with Denmark, which has one for every 15,000. However the way forward requires more than increasing the number of experts.
"We need to move away from purely hospital-based epilepsy treatment into a community-centred model of care," says Dr Doherty. "What we need is eight or nine centres of expertise in epilepsy, open 24/7, nationwide. All would be linked to hospitals and GPs, for immediate access to patients' records.
"This can be achieved within three to five years with an investment of €5m, which is just a fraction of the amount being spent at present, given that epilepsy is responsible for five per cent of all hospital admissions, and acute hospital care costs €6bn annually."
HSE CEO Brendan Drumm has stated that he too wants to improve the service for patients with epilepsy in Ireland, and the Neurology Needs Assessment Report, which he commissioned, is due to be published shortly. While the professionals push for radical improvements, Brainwave, the Irish epilepsy association, provides information, support and advice on the disorder.
"Epilepsy can be quite isolating, so we encourage schools to invite us to come and talk to pupils and teachers about what to do and, just as importantly, what not to do when someone is having a seizure," says Brainwave spokesman Peter Murphy.
Ignorance
"We find that information lessens the risk of bullying and teasing caused by ignorance.
"We also provide details of appropriate first-aid procedures on our website, www.epilepsy.ie."
Another who's playing his part in combating the isolating effects of the condition is Neil Kenealy, managing director of New Media Med, who is working in conjunction with St James's Hospital on a pilot scheme for Ireland's first epilepsy social-networking site.
"The idea is to facilitate people to connect with others who have the condition, both online and face to face, and to access the wealth of information available from those with first-hand knowledge," says Neil.
"They can upload videos and articles, chat, and exchange information. Given that research shows that 94pc of what's shared online in this manner is accurate, we know this is a valuable resource."
Dr Doherty agrees: "It's a way to tap into what's known as the 'wisdom of the crowd'," he says. "All together, my 800 patients know more about epilepsy than I do, so it makes sense to provide a way for them to share that knowledge."
One question which will doubtless bounce back and forward on the new networking site is whether there's any sign of a cure for the disorder, and for the many who ponder this question every day, Dr Doherty has this to say.
"For our size Ireland is punching way above its weight in epilepsy research.
"Give us 10 to 15 years to fully understand the genetic link, and we can be hopeful of finding a cure."
tickets for Brainwave's fundraiser, The Horse Show Shuffle, which takes place at Krystle nightclub on August 7, cost €30. Tel: 01-4557500
for more information:
- www.epilepsy.ie
- www.infer.ie
- www.nationalepilepsycentre.ie
- Rita de Brun
