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Column: My son has epilepsy and stigma still surrounds the disease

Today marks European Epilepsy Day, a disease which is still underfunded, understaffed and underdeveloped in Ireland, writes John Verling.

John Verling

WHAT IS EPILEPSY? For one thing, it’s not the “falling down” disease of ‘grand mals’ that is still very much associated with the condition. It’s a complex neurological disorder that very little is known about, even by those treating it.

Epilepsy only becomes apparent when a seizure occurs but there are many different seizure types reflecting the ways that epilepsy affects the brain. If you have epilepsy, you tend to have recurring seizures and about 1 in 130 people have it in some form or other. That is a lot of people.

Maybe it’s because there has been a stigma about epilepsy for so long that it doesn’t get mentioned as often as it should. Not so long ago people were sent to mental institutions as a means of dealing with epilepsy. It seems unbelievable now, but that used to happen.

Stigma

The association of being possessed by the devil still lingers in parts of Tanzania and West Africa. Many people who had epilepsy tried to hide ‘the shame’, a move that probably added more to the stigmatisation than any other prejudice. Many famous people have had epilepsy, some were born with it others acquired it later in life. Among the names on a long list are Julius Caesar, Neil Young, Prince and many, many more.

Because it is possible to deal with epilepsy and live a somewhat normal life, it may not be taken as seriously as it should be. My son Freddie has intractable epilepsy, it’s not responding to medication and so his life is very curtailed. He can’t go to school, go anywhere on his own, parties and other occasions are not possible – terrible for a ten year old.

Freddie was diagnosed when he was six years old. At least his condition was confirmed when he was six. In fact, he’d been having seizures since he was nine months old. Initially they were being put down as febrile convulsions, a not too uncommon reaction in children to high temperatures. Whether all his seizures were due to febrile convulsions or they were all epilepsy we’ll never know.

What we do know is that epilepsy services in Ireland are underfunded, understaffed and underdeveloped and probably the only thing they aren’t ‘under’, is ignored. One would imagine that, with the high amount of people suffering in some form or other, more attention would be paid to the services.

A normal life is possible

Recently I was talking with a friend whose daughter has epilepsy. She has had great difficulty in keeping a full-time job. Very difficult to prove active discrimination but yet as soon as an employer is told of her condition she finds contracts are not renewed. On the other hand, a close friend, also with epilepsy, works for Apple and the care he gets is excellent. That is the nub of the argument for me, epilepsy, once controlled, is possible to live with, it is possible to have a normal life.

This brings us nicely to the major problem for people with epilepsy in Ireland. The services provided by the health services are not good enough. The recent case in Cork, where a new epilepsy unit at Cork University Hospital, which monitors seizures remains closed, highlights the problems that my family have encountered. The service is stretched, underfunded and understaffed. It’s simple medical practice – you diagnose the problem, discover its source and try fixing it.

With epilepsy, the important thing is the diagnosis. It’s obvious when someone is having a seizure; once they have two or more it’s more than likely epilepsy. That is when you need the monitoring. Monitoring helps confirm diagnosis, where the problem is starting in the brain. Once you have all the information, and it may take time, you decide on the appropriate medicine or if surgery is an option. Finding the source is vital; medicines only work on certain parts of the brain.

Epilepsy units shut

None of this is possible without monitoring. It’s a relatively cheap way of improving somebody’s life – forever. The cost is in the initial build of the unit. The HSE spent €900,000 on two units last year; they still lie empty. It beggars belief that they could spend so much, on something so vital, and then mothball them. It’s like buying somebody a car and then make them crawl on all fours instead of using it.

Luckily, we got the monitoring for our Freddie but only with the help of a close friend. In the Ireland of today, after all we’ve been through, it is still a matter of ‘who you know’ when you need something done. Now, because of the success of the service, we are looking at the possibility of surgery for our little man. It hasn’t been easy. Four years of struggle, ambulance trips, eight different medicines, fortnightly hospital admissions, three moves of house and constant containment, but we’re getting there.

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Still nothing has been confirmed, there is still a long road ahead of us but at least we know the road is there now. All of this could have been avoided if a dedicated monitoring unit was available when Freddie’s epilepsy took a turn for the worse. Only when an irregularity showed up on his right frontal lobe was the correct medicine prescribed and the idea of surgery justified.

Not alone

It is certain that my family are not alone in this. We meet people at every clinic, at every hospital visit, who are in the same boat as us.

So much suffering and fear could be avoided for so many people if the HSE provided the services. Many, many people could be living normal lives, going to school or going to work if simple monitoring was available.

Today is European Epilepsy day. For those of us living with epilepsy it is great that awareness is rising but much more needs to be done. For instance, there has never been a public health campaign about how to help a person having a seizure. A simple set of instructions could save someone’s life.

For now – get those monitoring units open and get diagnosing.

Read: New gene could potentially prevent epileptic seizures>

John Verling is a father of three children and is from County Cork. He writes a blog called Verlingsweek. To read more from John for TheJournal.ie click here.

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