Living with epilepsy: One young woman's story

Clara Sequin is one of thousands of young people in Ireland living with epilepsy. She has had to grow up quickly, says Áilin Quinlan

UNLIKE many of her more happy-go-lucky peers, 20-year-old Clara Sequin has to think carefully before going out two nights in a row.

The same goes for managing her stress levels, eating a healthy diet, and ensuring she gets enough sleep.

Because if the young shop assistant doesn’t make a point of looking ahead and being mindful of how she lives, she could end up having a massive seizure.

Clara, from Carrigaholt, Co Clare, is one of thousands of young people with epilepsy in Ireland today. Having the condition, she says, has made her grow up far faster than she would otherwise have done — and it’s affected her ability to spread her wings and take to the skies like most young adults. “I feel it has affected my independence,” she says.

“Driving would be an issue for me — I have to have a seizure-free year before I can even think about getting lessons.”

he also worries about future job prospects. “You’d also be afraid that the epilepsy would be a burden for people — for example, you’d be afraid it could affect your job prospects because people are a bit nervous of epilepsy.”

All of this, she says, has made her more anxious about the future than she would otherwise have done.

“You have to grow up a lot faster than you should. It makes you worry about things you shouldn’t really have to be thinking about. You’re constantly worrying — will I be able to drive in 10 years’ time? Will I be able to live independently?”

She used to get frustrated when she was first diagnosed — at 17— but now she says she accepts it.

“I have learned to live with it,” she says of her condition, which affects a total of about 40,000 people in this country. Epilepsy can occur at any age, though it is most common in early childhood before the age of seven, in adolescents 15-30 or in adults over the age of 60.

For young people like Clara, epilepsy can pose significant challenges, points out Peter Murphy, CEO of Epilepsy Ireland.

“Epilepsy can have a huge impact on young people’s lives especially in the areas of education, careers and driving,” he says.

“We estimate that each year there will be 500-600 students with epilepsy sitting the Leaving Cert exams and that at least a third of these students have uncontrolled seizures.

“For these students in particular, the threat of a seizure is a constant worry that can in an instant destroy years of hard work preparing for a terminal exam.

“We work with families every year in this situation and for some the fear becomes a reality forcing students to unnecessarily repeat their Leaving Cert a year later.”

On top of that, he says trying to carve out a career for a young person with epilepsy can sometimes be difficult — though in most cases it shouldn’t hinder progress. However, any young person with epilepsy will find it difficult to work in a job that will require them to drive a lorry or bus, for example.

“The impact of epilepsy varies a great deal and decisions on employment should be based on each individual’s circumstances,” says Murphy.

“Most young people with epilepsy are perfectly able to work at whatever they choose to do.

“Others do not have any particular difficulties when placed in the right job, but each person’s difficulties and limitations need to be individually assessed.

“Epilepsy Ireland believes that special consideration should be made for people with epilepsy who are medically ineligible to drive to be granted free travel as a standalone entitlement separate of the current requirements for welfare payments.

“Losing a driving licence due to an epilepsy diagnosis can have a major impact on all aspects of a young person’s life and such an entitlement would greatly assist them both in their career and personal life.”

Young people, particularly teenagers, can have a difficult time with epilepsy, observes Dr Colin Doherty, consultant in neurology and epilepsy at St James Hospital Dublin and national lead for the state epilepsy programme.

Adolescence and other periods of life transition are particularly difficult for people with the condition, he says, because symptoms can worsen during these periods.

Epilepsy Ireland currently funds an epilepsy specialist nurse, who helps adolescents with the transition from the paediatric to the adult care services. However, says Murphy, more support is needed.

“Many countries have a transition service with a specialised nurse who would facilitate the movement from the paediatric to the adult services,” he says, adding that the organisation wants to see the health services fund the appointment of more epilepsy nurses specialising in transition.

Clara — who took a year out of college, but is planning to return to third-level in September 2018 — was in her Leaving Certificate year, when she had her first seizure. It was so severe that it left her with a dislocated shoulder.

The teenager had a battery of tests including a CAT scan and an MRI. Following a second seizure a few months later, she was diagnosed with epilepsy, a condition which affects one in 100 people.

In college, Clara wrote a blog about her condition as part of the coursework assigned for the first year of her arts degree — the six posts got a strong and positive response on social media, she says.

Epilepsy is never far from her mind. “I now have to think about everything I do,” she says.

“You cannot be carefree. You must always be one step ahead. For example, if I want to go out two nights in a row I’d have to think about it because if I go out the second night I could have a seizure brought on by exhaustion.

“I have to be careful. I always have to get eight hours sleep,” she says, adding that she has learned that lack of sleep or even exam stress, can trigger an attack.

“I also have to be careful about getting colds or ‘flu and about my stress levels. I was doing an exam last November while I had a sinus infection — I was quite stressed. I had an epileptic fit.”

While her twin sister Isabelle has had the condition since the age of seven, no other members of the extended family has epilepsy, says Clara, who takes medication twice a day and is careful about her lifestyle.

Lifestyle can impact on how well you manage epilepsy, warns Dr Doherty.

“Getting regular sleep, eating a diet low in carbs and high in proteins and fats can help manage epilepsy,” he explains, adding that it is also necessary to manage stress.

“Even if some people need medication, the medical burden can be low if it is taken in conjunction with a sensible, healthy lifestyle.”

Epilepsy has a significant impact on day-to-day life, says Dr Doherty. “There is a huge impact on the individual,” he says, adding that it’s calculated that the direct cost of healthcare of epilepsy is about €130m a year in this country — the condition accounts for some 6,000 hospital admissions per year in Ireland and about 30,000 bed days.

The indirect health costs of epilepsy, such as work absences, are estimated to be around €260 million.

Epilepsy appears to be caused by the simultaneous firing of neurons in the brain.

“Normally neurons fire at different times but if it happens all at the same time, it causes involuntary changes in the body,” says Dr Doherty.

When a proportionately small number of neurons fire simultaneously, he says, a person may experience some brief confusion or the jerking of a limb. If billions of neurons fire at the same time, however, it causes a massive convulsion.

About 30% to 50% of people with epilepsy have no apparent underlying cause.

Medics think such people may have a genetic pre-disposition. Other causes include infection, scars on the brain, tumours, stroke or trauma, while epilepsy can also result from a combination of factors including genes.

It is estimated that up to 70 billion people worldwide have epilepsy — but it seems, the prevalence of this condition is changing in different sectors of the population.

It’s reducing in children and teenagers but increasing in the elderly population, says Dr Doherty.

A study by Epilepsy Ireland in 2009 found a slight year-on-year increase in the condition while research published in the US last August showed the condition was more prevalent than five years ago.

However, says Peter Murphy, this may be down to factors such as increased reporting of seizures, better diagnosis, greater longevity - over 60 is a common age of onset- and also population growth. Up to 70% of people with the condition manage it with a combination of medication and an appropriate lifestyle.

About 30% have refractory seizures as a result of having drug-resistant epilepsy.

For them, surgery is an option, but it is effective in only 60% to 70% of cases.

Dr Doherty would like to see more specialist epilepsy nurses appointed. Currently, there are just 16 operating around the country.

“Even if we brought this number up to 40 nationally it would be a help,” he says, adding that more investment in IT is also needed to improve the sharing of data between the six epilepsy centres in Ireland — spread across Galway, Dublin, Cork, Limerick, and Sligo.

Supports for epilepsy services have improved significantly over the last 10 or 15 years, says Murphy, who points out that the number of consultant neurologists has increased significantly, up from about a dozen 15 years ago to more than 30 now.

However, he also refers to the recommendations of the NICE guidelines, where, for epilepsy, the recommended ratio is one neurologist to every 70,000 people.

“We are really only at about 50% of that,” he says, adding that the length of waiting lists, more than a year in many centres for MRI scans — often a significant element in the diagnostic process — is of strong concern.

The appointment of around 16 specialist epilepsy nurses has improved levels of patient support and education, freeing up specialists to focus on the more acute and complex cases, he says, adding that the organisation wants to see more appointed, particularly in centres which do not have them.

Along with pushing for epilepsy nurses specialising in transition care for teenagers with the condition, the society also advocates the appointment of nurses specialising in both the area of epilepsy and intellectual disability for people who have both conditions.

“Epilepsy is far more prevalent in people with intellectual disability and this area is under-resourced,” says Murphy.

The role of genetic testing, which is now internationally acknowledged both as a diagnostic tool and as having a role in the treatment of epilepsy is not sufficiently evolved in Ireland, he says.

“We need to increase the availability of genetic testing. It is a service which is very understaffed and very under-resourced,” he says, adding that it’s currently difficult for patients to avail of genetic testing.

“As a result people may end up being treated for years through trial and error.”

Case study 

Epilepsy has had a significant impact on the life of 23-year-old Chris O’Brien — but he’s not letting his condition prevent him from living his life.

Chris, who had his first epileptic attack at 13, had chosen to train as a plumber, but while still an apprentice, he had to leave the trade after experiencing a seizure on a building site.

“I had a seizure on site and I basically decided to leave the trade because I was advised that having seizures was not safe on a building site,” says the young Mullinahone, Co Tipperary man.

He is currently a student at IT Sligo, taking the year-long Training for Success course run by Epilepsy Ireland.

“If I do well in the course, I’m planning to begin a business marketing degree programme at IT Sligo next year,” says Chris who still plays a lot of sports but is careful about getting enough sleep, eating properly, and taking his medication.

Up to age 13, he recalls, he was living a normal life and playing lots of sport — hurling, football, soccer, and rugby.

He had his first seizure that year, while he slept, and ended up in hospital.

After two more attacks in the following months — both nocturnal — the youngster was diagnosed with epilepsy and put on a low dose of medication.

At age 20, however, he started having seizures during the day. Although the dosage was increased, he now has three or four seizures a year.

“I don’t let it slow me down. I still play hurling and football and I still go out, but I don’t overtire myself because I know exhaustion can affect it. I have a stable diet and I stay on the medication,” he says, adding, however, that he had a significant seizure last

“I was in hospital for a week and was told that if I had another one as serious as that again, my medication would have to be increased but it hasn’t happened yet. I don’t let my epilepsy hold me back I don’t want it to affect my life. I work around it.”

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