Epilepsy sufferers speak out about their concerns
12:00am 8th June 2012
One of the largest-ever UK-wide surveys of people with epilepsy conducted by ComRes for leading charity Quarriers finds discrimination against people living with the condition is rife in all areas of life.
People living with epilepsy fear leaving the house in case they have a seizure in public, according to a UK-wide survey - commissioned by charity Quarriers - which gives some sobering insights in to the discrimination faced by those living with one of the most common neurological conditions.
The ComRes poll, one of the largest ever undertaken of people living with epilepsy in the UK, found more than two-thirds (69 per cent) of the 505 people interviewed admit they worry what members of the public would say or do if they had a seizure.
Epilepsy currently affects more than 600,000 people in the UK, making it one of the most common neurological conditions. There are as many as 50 types of epilepsy.
A third (33 per cent) of those surveyed in the Quarriers/ComRes poll admit concern over having a seizure in public led to anxiety about whether to leave the house.
The reasons for this climate of fear can be attributed to attitudes towards those living with epilepsy in the UK. Just over half of respondents (55 per cent) believe discrimination towards people with epilepsy is widespread; more than one in four say they have been ignored (30 per cent) or laughed at (28 per cent) during or as a result of having a seizure.
A quarter (26 per cent) revealed they had been accused of faking or exaggerating a seizure, while some - seven per cent - have even been filmed or photographed when at their most vulnerable.
Nearly all those polled (94 per cent) feel that most people don't know a lot about epilepsy - with more than three quarters (77 per cent) claiming the general public make incorrect assumptions about how their epilepsy affects them.
Other key findings from the ComRes survey include:
· More than three-quarters (79 per cent) of those living with the condition feel dependent on their medication;
· Over seven in 10 (72 per cent) respondents say the condition has had an impact on their career progression and choices;
· Sixty per cent say epilepsy has had an impact on relationships with friends and family while 54 per cent say it has affected intimate or sexual relationships;
· Fifty two per cent feel others treated them differently after they had revealed they suffered from the condition;
· Almost half of those polled (47 per cent) reveal they have sustained a serious injury as a result of having a seizure;
· More than two-fifths (43 per cent) avoid telling people they have epilepsy
Quarriers is the leading epilepsy service provider in Scotland and Gerard Gahagan, head of clinical services at the charity, admits the findings of the survey make for sober reading and has called for more to be done to stop the stigma associated with the condition.
Mr Gahagan says:
"The survey results confirm attitudes towards people living with epilepsy in the UK have not changed for centuries. It appears we are stuck in the dark ages when it comes to how we treat those who suffer from one of the most common neurological conditions. These attitudes simply have to change - and fast".
"Around one in 100 people in the UK suffer from epilepsy, so there is a high probability perpetrators of the discrimination could actually have a relative or friend who is avoiding revealing they live with the condition because they fear what the reaction will be".
"At Quarriers we believe people living with epilepsy should be able to go about their daily lives without fear of having a seizure in public or worrying about what others may say or do."
Quarriers runs the Scottish Epilepsy Centre (SEC), an independent hospital based in Quarrier's Village just outside Glasgow, which assesses and diagnoses more than 100 people each year living with very complex forms of epilepsy and some who have been misdiagnosed.
Next year, Quarriers will open a new, state-of-the-art £6.4 million epilepsy centre in Govan, Glasgow.
The charity's founder William Quarrier first became interested in the plight of those living with epilepsy in the 1900s when a Colony of Mercy was established in Quarrier's Village. Since then the charity has treated thousands of people living with epilepsy.
CASE STUDY ONE - SARA BRANNAN
Sara Brannan, an outpatient at the Quarriers Scottish Epilepsy Centre who lives in Glasgow with her 10-year-old daughter Mary-Jo and husband Paul, was mugged while having a severe seizure. The experience has had such a negative impact on her life that she no longer ventures out alone.
"I was lying unconscious during a seizure with my shopping bags on the ground," said the 33-year-old".
"A man, who I now think may have been a drug addict, must have been standing behind me and spotted an opportunity. He told the gathering crowd I was his girlfriend and had overdosed. He took my money and my shopping bags."
Sara has experienced more than her fair share of horror stories related to her condition".
"People usually ignore me if I have a seizure in public because they think I'm drunk or have been taking drugs".
"I've been told people have stepped over me while I've been lying unconscious. I was once kicked out of a shop just before I was about to take a seizure after asking for a glass of water so I could take a tablet to try to prevent it coming on. I guess the shopkeeper thought I was an addict of some kind."
Sara was diagnosed with epilepsy aged eight but the seizures she experiences have become progressively more severe and frequent.
She feels dependent on medication which she needs to take within five to 10 minutes of waking up or she will have a tonic-clonic seizure - one which affects the whole of the brain. A particularly violent seizure of this kind can leave her exhausted for up to eight hours.
These regular seizures, which include various other kinds such as drop attacks, began a few years after having her daughter, Mary-Jo. Before that, Sara worked in various reception, administration and retail roles during her teens and early twenties.
"I found it very difficult to keep a job after the three-month probation period,"
"I once was sacked for 'scaring staff'. I had accident after accident at work, so for some places it was an insurance issue, but others just had stinking attitudes towards epilepsy - and these are adults I'm talking about, people who were older than me at the time."
Sara now takes art therapy classes and hopes to do an evening class in the future, but says that living with epilepsy means taking one day at a time. This involves not only controlling the condition with medication, but also coping with injuries sustained during seizures. She has broken so many bones over the years that she now has joint problems and sport-type injuries, as well as severe pain in her tailbone.
"I've broken seven ribs, fractured my skull twice, broken my nose three times, broken my tailbone twice - once while pregnant,"
"I've broken fingers, my arm and my breastbone. Once I fell down a flight of stairs on a railway bridge; I already had a fractured skull, so it was re-fractured. I now have damage to the frontal lobe of my brain which means I get different types of epileptic seizures."
CASE STUDY TWO - JULIE FERGUSON
The football pitch is one place where calls of faking it are common - usually referring to dramatic tumbles in view of the referee. But when Scotland international right-back Julie Ferguson had a grand mal epileptic seizure during a match, she faced accusations of cheating.
"I was playing for Hibernian at the time and we were in the semi-final of a cup game," said the 33-year-old digital marketing consultant from Glasgow who is an epilepsy ambassador for charity Quarriers".
"We were losing and one of our players had been sent off, then I had a grand mal seizure".
"I was carried off the pitch and 10 minutes extra time was added to the game, during which we scored two goals and won. Some members of the opposition suggested I'd faked the seizure to get extra time."
Julie may have developed epilepsy after sustaining an injury during a football game in 2003.
"I took a bad head knock when someone elbowed me in the face," she says. "The doctors can't say for certain, but it could have been the trigger."
She refused to let the condition put an end to her football career but believes many people with epilepsy are discouraged from playing sport.
"Luckily, I was supported by my coach and other players," Julie added. "They didn't make a big issue of it and encouraged me to see specialists. There were times I had partial seizures during matches, where I'll be twitching and conscious, but managed to keep playing."
Since retiring from professional football, the frequency of Julie's seizures have reduced.
As she acknowledges: "Playing professional football while trying to hold down a job is stressful and puts your body under a lot of pressure."
Off the pitch, she hasn't encountered many other negative reactions to her epilepsy.
"Anyone with epilepsy will have come across the accusation that they're faking it - it's a common response from people who are naïve about it or frightened by it. Thankfully, I have a very good circle of friends, colleagues and family around me, so I can brush off anyone who says anything silly."
EPILEPSY FACTS AND FIGURES (PROVIDED BY JOINT EPILEPSY COUNCIL)
- 602,000 people in the UK have a diagnosis of epilepsy and take anti-epileptic drugs. This is broken down as England 496,000; Scotland 54,000; Wales 32,000; Northern Ireland 20,000
- Epilepsy is a tendency to have recurrent seizures. It can affect anyone, at any age, from any walk of life. It is one of the most common serious neurological conditions
- There are as many as 50 types of epilepsy, which is a neurological condition
- The condition is caused by excess electrical activity in the brain
- Epilepsy can be brought on by brain damage caused by a number of factors including a stroke or a severe blow to the head
- For the majority of people living with the condition there is no known cause
- Approximately 60 per cent of people have tonic-clonic (full brain) seizures, 20 per cent complex partial (loss of consciousness), 12 per cent mixed tonic-clonic and partial, three per cent simple partial (affect only a small part of the brain) and less than five per cent absence seizures (brief seizures often lasting a few seconds), myoclonic (twitching muscles) seizures and other types
- Around three per cent of people with epilepsy are photosensitive and have seizures induced by photic stimuli such a flash bulbs on cameras
|Get the latest local news direct to your inbox.
Sign up now for our email updates.