CLIENT STORIES - PEOPLE LIVING WITH EPILEPSY
Emma Corfe - A passion for more than just football
There is an obvious closeness between Emma and her dad, Jeff Corfe, that shows father and daughter have experienced a lot in their lives. They continually banter with each other and share a wicked sense of humour, a love of the Magpies football team and a passion for doing something to change community perceptions about epilepsy.
Jeff or ‘Joffa’, is the well-known, mad-keen Collingwood supporter who dons a sparkling gold jacket when his beloved football team wins a game. Emma is his 25-year-old daughter, much more reserved than her dad, but also passionate about her football team and her three children Simon, Jeff and Destiny-Pearl. Destiny is just ‘Pearl’ to Joffa, who is more inclined to like traditional names like Pearl than contemporary names like Destiny. And he and Emma rib each other about that, too!
But there is a serious side to Joffa that comes to the fore when he talks about epilepsy and its impact on people like his daughter. Emma was 14 years old when she had her first tonic-clonic seizure. It was a pretty standard day when Emma was getting ready to go to the football. Suddenly from her room came “crashing and banging”. Joffa and his friends rushed in to find out what was happening.
“It was an almighty crash and I knew that Emma had had a seizure as soon as I saw her,” recalls Joffa. “I wouldn’t say I was surprised because I knew what epilepsy was. Emma had also been having some ‘silent shakes’ as I call them, that I thought might be leading to epilepsy. But when it happened, it was very frightening … and she re-arranged her room at the same time,” he laughs.
Emma has no memory of the actual seizure, of course, but she does remember coming out it. “I didn’t know what had happened to me; I didn’t know the first thing about seizures. I remember my dad and his mates all around me in a panic and I actually got quite scared because they were saying that the ambulance was on the way.”
“I remember waking up and thinking I must be dying. It was very scary. I didn’t hurt myself badly that time, but I bit my tongue and had a very bad headache afterwards.”
It was confirmed that Emma had experienced a seizure caused by epilepsy and she was referred to a neurologist.
As any teenager would do, Emma just carried on with life. She continued to have intermittent seizures, but it was when Emma was pregnant with her eldest son, Simon, that her epilepsy seriously flared up again. “It really went haywire then,” says Emma. “I was having at least one a week, sometimes more.”
“From our experience, I think people with epilepsy need to see a specialist.”
During the next few years, Joffa remembers taking Emma to a number of GPs. “We weren’t able to get the level of medication right for a long time. In more recent years, we went to the neurologist centre at a major hospital and they did a lot of examinations. What they found was that the medication was far too low, so they increased it and the seizures decreased to one or two a year,” says Joffa.
As Joffa says wryly, “Emma doesn’t mess around – they’re full-on seizures. So I would really send a message to people experiencing epilepsy in their family to get a referral from their GP to go to see a neurologist. From our experience, I think people with epilepsy need to see a specialist.”
Emma doesn’t let her epilepsy stop her from living a normal life. “In a way I’m lucky because generally I have short episodes of shaking, little blackouts, on the morning of the day I have a tonic-clonic seizure. So I never go out that day; I stay home.”
A worrying aspect is having a seizure in front of the children and Emma has experienced a number of them while her children are present. Both Emma and Joffa are adamant about the importance of parents explaining to their children about their epilepsy and going through the procedure with them, so they know what to do. “It’s very frightening for a child to see a parent having a seizure, so it’s important for the children to be included in learning what to do. It could save a life.”
Emma hasn’t always wanted to let people know about her epilepsy, let alone become a public figure explaining about her epilepsy. “I didn’t want to tell anyone. When you’re young, you look forward to going for your driving licence and suddenly you can’t. I only told my family and close family friends.”
“I remember when Dad told me he wanted to do the walk for epilepsy for the Foundation – that was the last thing I wanted to hear! I remember saying to him: ‘Don’t go telling anyone that I have epilepsy. You can do the walk, but don’t tell anyone about me.”
Joffa picks up the story. “Then within a few weeks, we had a lot of publicity, so I think Emma realised that she could help other people in her position. It’s good for people to realise that she is just like everybody else, except she has epilepsy. I think it was good for Emma too.”
“Emma is very reserved. It is a big thing for her to tell her story … that she’s a young person, a young mum with epilepsy and life goes on … so that other people can learn from it. If we don’t know that other people have epilepsy, they can feel alone. And they shouldn’t need to feel alone.”
At one stage, Joffa lived close to the Epilepsy Foundation and was aware of epilepsy in the community. But his passion for trying to raise awareness of epilepsy strengthened when Emma was going through bad times with it. “You hear the reactions of some people to another person having a seizure, and I really think they say unpleasant things because they’re ignorant about epilepsy. Even though it’s such a common condition throughout the world, people still don’t understand it.
“Maybe it isn’t one of those glamour illnesses, and that’s why we need to change perceptions about epilepsy – that people with epilepsy are very normal, they just have epilepsy. There’s no doubt it can be frightening for onlookers. But people are good and if someone needs help, they will assist, as long as they know what to do.”
Through Emma’s experiences with epilepsy, Joffa decided to see if he could offer any help to the Foundation. “Because of Emma, I rang the Foundation to see if there was anything I could do in a voluntary capacity. It’s just a magnificent organisation – they do so many great things for so many people.”
“Even though it’s such a common condition throughout the world,
people still don’t understand it.”
This year when the Magpies win and the gold jacket comes out, it will be emblazoned on the front with the Epilepsy Foundation logo. “When I’m at the footy I hand out Epilepsy Foundation cards, and often I get people telling me or writing to me on my website that someone in their family, a child or adult, has epilepsy and encouraging me to keep it up.”
“I hope that when people see the Epilepsy Foundation logo on the jacket they will think: the Epilepsy Foundation means something to Joffa. The important thing is to spread awareness of epilepsy, however we do it.”
“We only need one family or person to benefit from seeing the Epilepsy Foundation logo, and it will all be worthwhile. People understand more about epilepsy than they did 30 years ago, but they still need to know more. It’s a wonderful organisation, and it puts people in touch with each other”.
Emma is currently studying for a diploma in medical counselling, and hopes to continue on to a degree in counselling.
Joffa’s wish is to combine his love of football and his passion for epilepsy awareness. “I would love to see the AFL have an epilepsy round; I would love to see my (Collingwood) club support epilepsy awareness.”
Emma’s final message to parents with children is to teach them the epilepsy first aid message. “Teach your kids about it; educate them. Don’t be afraid to tell them about epilepsy and what they need to do”.
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