Carol Ireland and Renee Elliott Epilepsy Interview
Alarming new findings from Epilepsy Action Australia (EAA) reveal epilepsy remains a 'forgotten' illness that Australians admit they poorly understand, despite more than half knowing someone living with condition.
A brain disorder that does not discriminate, epilepsy occurs in all ages - from young babies to the elderly. The condition is in fact most common in the under 20s and over 65s.
Commenting on the challenges children with epilepsy face, Carol Ireland, CEO, Epilepsy Action Australia said: "The survey findings revealed less than a quarter of Australians (25%) understand the longer-term challenges for children with epilepsy such as keeping up with school work or excelling academically."
While epilepsy is one of the oldest conditions known to man - reviewed by Hippocrates in 400BC and featured in the Bible - the research found it sits at the bottom of the pile among Australians when it comes to disease knowledge. Yet it affects more than half a million people, at some point during their lifetime - significantly more than well-known diseases such as breast cancer.
The majority of Australians (72%) unfortunately stereotype epilepsy as convulsive seizures or 'fits' (known as tonic-clonic seizures). Just one quarter (28%) appreciate seizures can come in many forms and be very subtle in how they present - the most common, known as complex partial seizures, occurs as altered awareness with repetitive purposeless movements - such as tapping and chewing.
According to Associate Professor Armin Mohamed, Neurologist at Royal Prince Alfred Hospital; "The day-to-day challenges that people with epilepsy face is much greater than controlling seizures alone; additional problems that they have to deal with include memory and concentration problems, dealing with prejudice and discrimination, having depression and anxiety."
Epilepsy is the world's most serious brain condition. In fact there are more people currently living with epilepsy than with multiple sclerosis, cerebal palsy, muscular dystrophy and Parkinson's Disease combined. Sadly however, due to social stigma and misconceptions associated with epilepsy, many people do not disclose their condition. This has led to low community awareness about epilepsy.
Interview with Carol IrelandQuestion:
What is epilepsy?Carol Ireland
: Epilepsy is a seizure disorder and what causes the seizure is a disruption to the normal electrochemical activity of the brain. Imagine all the neurons firing around the brain and then there is a disruption which can occur from a few seconds to many minutes.
Some seizures are provoked by known causes such as high fever, fainting, concussion and those seizures are not epilepsy. Epilepsy is when there are spontaneous and reoccurring seizures.
It is important to keep in mind that epilepsy is something that can happen to anyone at any time; it's not something that hits a particular age group or gender or even a certain cultural group or background. Epilepsy doesn't discriminate it can hit anyone, at any time. If you chart Epilepsy you can see that the incidence is higher in children, in fact people under 20 and over 65 years of age. Question:
Can you talk about the stigmas associated with Epilepsy?Carol Ireland
: Unfortunately there is stigma or at least perceived stigma from those who have Epilepsy. There are a lot of different reasons for the perceived stigma including the current lack of understanding and a survey we did recently certainly tell us that the Australian population doesn't really understand what Epilepsy is and there are a range of misconceptions and a lack of understanding surrounding it.
I think we also need to look back into history because at different stages through history Epilepsy has been associated with witchcraft, evil spirits and divinity. The Romans, the Greeks and the very ancient civilisations recognised Epilepsy but it had been thought to be many different things from one time to another; in some countries, particularly under-developed countries there is still reminisce of that.
Convulsive seizures that people recognise as Epilepsy can be quiet confronting and people can be a little afraid when they see someone having a seizure and they don't know what to do. Certainty the people we work with talk about discrimination in regards to being unemployed, losing a job or not being able to get a job if they say they have Epilepsy. We hear heartbreaking stories from parents whose child has been excluded from a party, sleepover or even school or preschool because of their epilepsy. Sadly all of this still happens today.
Recent research showed that more than 55% of people actually know someone with Epilepsy and it is someone they know reasonably well and yet a third of people only become aware of that friend having Epilepsy because they have had a seizure in public. There is a real issue of disclosure for people with Epilepsy because they're afraid to say they have Epilepsy. Question:
Did recent research that stated Epilepsy remains a 'forgotten' illness surprise you?Carol Ireland
: Certainty we don't hear Epilepsy being discussed in politics or in the media at all. We suspected there would be a lack of awareness about Epilepsy and what it actually is and that is the reason why we did the survey. Epilepsy Action Australia is an organisation that works with people who have Epilepsy to ensure a better quality of life. There are two things we do: work directly with the person or the family and support them in whatever way we can and the second is to look at the community and see how they support and accept those with Epilepsy. We expected Epilepsy to be low on the list of awareness for Australians and that is what we found with the survey and yet it's a very common disease. Worldwide it is an estimated figure of 50 million people diagnosed with Epilepsy right now and 100 million will develop the condition during their lifetime. In Australia that is 500,000 people who will develop Epilepsy in their lifetime. Epilepsy is the world's most common serious brain condition.
One of the statements that we have often quoted is from the World Health Organisation which says "Epilepsy is the world's most common serious brain disorder and probably the most neglected" in terms of awareness, resources and so on. Question:
How is Epilepsy Action Australia working to create awareness for Epilepsy?Carol Ireland
: We are a non-profit organisation and advertising costs are prohibitive which is why we use whatever we can to get out into the community and raise awareness. We are trying to explain that Epilepsy is a neurological condition, it's not a psychiatric or mental health issue and it's not contagious. Epilepsy doesn't discriminate, it can happen to anyone.
Our second message is that stereotyping is not helpful, we found that people think Epilepsy is either not a big deal (you find out you have it, take a pill and then it's not a problem) or Epilepsy is a regular convulsive seizure and that's not for a moment the most common form of Epilepsy. There are lots of different types of seizures that present in more subtle ways; every person will be different in terms of their ability and terms of Epilepsy.
The third message from us is to encourage people to learn as much as they can, if they have a family member, friend, work mate or acquaintance that has Epilepsy. It is important to find out what you can do to help. Epilepsy Action Australia can provide resources. Question:
What inspired you to become involved with Epilepsy Action Australia?Carol Ireland
: I am an employed member of Epilepsy Action Australia. I have been working in the human services disability health field for more than 30 years. The position of CEO of Epilepsy Action Australia was a nice match for me, when the position became available about six years ago. My oldest brother has Epilepsy which he developed when I was eight years old and I grew up seeing my brother have a chronic seizure and not understanding whilst also seeing the affect Epilepsy had on my family, over a number of years. My brothers Epilepsy has been managed with medication but even in recent years he had a seizure in the shower and broke his leg. I have had some indication of what the impact of Epilepsy can be on a family and I have certainty learnt a lot through the current consumers and the needs of the courageous and inspiring people or for their child. Question:
How does epilepsy affect someone on a daily basis?Carol Ireland
: Epilepsy varies so much from one person to the next. There are about 40 different kinds of seizures and people can have one seizure a year or even fewer up to 100 seizures in a single day. Those who have reasonably good seizure control never quite get away from the fear of when their next seizure might happen. I met a lady who hadn't had a seizure for ten years and she said "there wasn't a day when she woke up and didn't go off to work worried that would be the day she would have a seizure". Even if medication controls the Epilepsy, they never quite get away from the psychological impact.
At the other end of the scale we have people who have 20 or 30 or even 50 to 60 seizures in one day and there are a number of physical effects on the person or child; including exhaustion, they are physically exhausted after numerous seizures and the seizure itself may cause injury as they may hit their head. There is also the psychosocial impact of the embarrassment including 'will these happen in public' and there are impacts on relationships as well as memory problems from Epilepsy or medication. People who are experiencing numerous seizures may also have difficulty holding down a job or a child may not be able to keep up at school. For some Epilepsy can be quiet devastating. Question:
What causes Epilepsy?Carol Ireland
: It is complex but anything that causes damage or scarring to the brain can cause Epilepsy. Brain injuries from sport or a car accident are reasonably common causes whilst there are genetic factors and other medical conditions such as stroke, brain infection or tumour of the brain which can cause Epilepsy. Also drug and alcohol misuse can cause Epilepsy. Anything that can damage the brain can lead to Epilepsy. At the moment 50% of the cases direct cause is unknown. Question:
Is Epilepsy preventable?Carol Ireland
: When you talk about preventable you can look at some of the lifestyle factors such as misuse of alcohol or drugs that will lead you to damage of the brain. Other than that, it's not preventable.
If someone has Epilepsy there might be seizure triggers that are more likely to bring on a seizure and in some cases if the person can identify what those triggers are we can educate people to avoid the triggers and make seizure control more effective. For some people seizure triggers can be sleep deprivation, alcohol use and for some flashing lights can be a trigger. Question:
Is there a treatment for Epilepsy?Carol Ireland
: There are a range of treatments available for Epilepsy but not what we would call a cure, unfortunately. In terms of treatments the first line of treatment is medication which might be a single anti-epileptic drug that might work but more commonly people need to try a number of different medications either singularly or in combination to get a reasonable control of Epilepsy. It's probably around 70% of people who have reasonable seizure control with medication. There are other treatments but they are not right for the majority of people.
Surgery is another treatment that has recently been profiled because of Wally Lewis who successfully had surgery to treat his Epilepsy. Around 1% of people are suitable to have surgery to treat their Epilepsy, it's only a very certain form of Epilepsy where surgeons can see a scratch or a mark on the brain that is in a place that is safe to remove; basically the surgery removes that part of the brain. Not very many people can have surgery.
Another form of treatment is Vagus Nerve Stimulation which is a pace-maker like device that is placed inside the neck and, again, not suitable for very many people.
There are some radical diets such as the modified Atkins diet, but they are reasonably radical and they're only for very specific types of Epilepsy.
Interview with Renee Elliott
Renee is aged 32 and is a person living with Epilepsy. She has come full circle since her diagnosis five years ago. Question:
Can you share with us your story about epilepsy?Renee Elliott
: I have what they term as adult-onset Epilepsy and I was diagnosed at age 27. When I was diagnosed I was working in the Queensland Coal District and I was what I like to call 'living my dream' at the time; I was young and successful and I loved it. I had just come off a project where it was 'fly in fly out' and I was relocated to a particular project where I lived on the water in Tropical North Queensland - I loved it! I had a great group of friends, I loved to party and travel and was planning trips to go overseas and all of a sudden I started to have seizures.
Epilepsy changed everything. In May of 2007 I was getting up to go to shift at 5am and I went to get out of bed and I was numb from the waist down, I couldn't feel my legs and I thought 'something is wrong' but because of the way this type of Epilepsy works which is called dyscognitive seizures I couldn't really associate the fact that something was wrong at the time and I tried again to get up and the second time I fell down and actually smacked my head on the corner of the bedside table and knocked myself out and put the table through the wall. I laid, unconscious for a number of hours and when I came to I got up and got dressed and went to work. I remember what happened now because it's a long time after the fact; you can come to a realisation of what has happened after the fact because you do have a recollection; your memory does come back, for some people. At the time I couldn't remember.
We had onsite paramedics at my work and I was asked "what have you done to your head" and I replied "I don't understand the question" and I was told I had blood in my hair. My head had been fixed and the next day when I was at work I was talking and all of a sudden I stopped talking and I was paralysed in my arms, my arms wouldn't work and I couldn't talk and because others recognised something was wrong, I was sent to the hospital, which was 45 minutes away.
The hospital couldn't work out what was happening and because we were based regionally they didn't believe that I hadn't ingested anything over the weekend. I rang my parents who spoke to my GP on the Gold Coast and he said "get on the next flight out of Mackay and come back here to get you looked at by specialists".
When I returned to the city I saw a neurologist who planned to do all these tests and I was put on a EUG and whilst I was hooked to the EUG I had a seizure and she said "I don't think we'll need to do anymore tests, you have Epilepsy". Question:
Can you remember what your thoughts were, at the time of diagnoses? Renee Elliott
: Initially I gained control quite quickly with medication and I was in denial that there was anything wrong with me because I had been well for 27 years and I had been flying in and out of projects. I look back now and realise that my life before I moved into the coal industry had been pretty lame and I had only worked 27 hour weeks and had a pretty easy life up until then. I had moved to an industry where I was working 70 hours a week and I was burning the candles at both ends.
My seizures are triggered by fatigue and illness but I still wanted to have it all and unfortunately because I was working so hard on my career that is what probably triggered Epilepsy.
As I got control, I actually got worse again because I was in denial that there was anything wrong with me. In January 2008 I had a massive seizure and I was unwell for about six weeks after that with post-seizure dialysis. After that I was still in denial that there was anything wrong with me but eventually it got worse and worse and worse and I had to give up work altogether. I could no longer work in the industry, which I was in, because you have to work very long hours to succeed and I need to control my fatigue to keep my seizure management in check. My body wasn't getting the break it needed when I was working 70 hour weeks especially because I had been newly diagnosed and my body was going through medication changes and other changes.
From a psychological point of view I was still in denial that there was anything wrong with me, like most young people I thought I was invincible. I was having 30 seizures a day and where I was working said to me "we think it's time, we can't keep having the ambulance come pick you up and take you to the hospital". Question:
How have your family supported you through this diagnoses?Renee Elliott
: I went back to my parents, I was living 1,000 kilometres from them and my parents cared for me, they were my carers for close to two years whilst I got my seizure control back on course. It was difficult because I was having almost 30 seizures a day. It was difficult because as an adult I was having 30 seizures a day and I was meant to be independent. Previously I had been earning a lot of money and I had gone from earning a lot of money to nothing. Question:
Can you talk us through how Epilepsy affects your daily life?Renee Elliott
: I have to take medication every day and I have to take it at the same time, every day. Initially in the early days I would set an alarm so I remembered to take it, now I don't need that because I am in the habit of taking it. Although because I travel a fair bit with my job, if I am flying and there is a time change I will set an alarm to tell me when to take it because if there is a change in time zone and I don't take my medication at a certain time my body can go out of whack and there is evidence to show that significant changes of the dose of medication in your body can lead to a high risk of sudden death.
I have seizures in my sleep and because my seizures do happen to occur in my sleep I am a lot more aware of the fact that I need to be compliant with my medication in regards to timing.
I manage my sleep patterns and for example if my friends are going out and they're going out late I will tend to have a sleep during the day to counteract the fact that I am going out at night and will also make up the sleep the next day.
Over the Christmas of 2011 I had meningitis and that threw my sleep patterns out because I was being woken up every 15 minutes to half an hour, for a week, by nurses coming in when I was in intensive care. It took almost three and a half weeks to get my sleep pattern back, I was overtired and not sleeping which meant I had to meet with my neurologist for help to get sleep.
If I don't sleep and I'm overtired and feeling fatigued I won't go into work, I'll actually stay home and get my fatigue back in order because otherwise it will make it worse for me and I can lose my seizure control. I do many things on a daily basis to ensure I am managing my seizure control.
I have to be proactive when I stay at hotels, I always have to request a room that doesn't have a shower over a bath so if I have a seizure in the shower I don't fall and the water backs up and I drown. I live alone and I have a shower over a bath and a second shower that has a cubicle in it; when I want to have a bath I have to have a friend over to hang out with me. I need to be aware of my risk factors and safety.
It's been almost two years since I had my last seizure, the last time I made it over two years but I had to fight a bacterial infection. Little things can unstick me and it is important that I manage those little things such as fatigue, sleep, food and exercise.
A lot of people don't think Epilepsy is something that is dangerous but for people that live with it, every day it is; Epilepsy can be a minor thing for those that manage it very well. My last seizure nearly killed me and the seizure before that almost killed me; Epilepsy is a very serious illness for me, if I fall out of remission and that is why I am very serious when I am looking after myself, on a daily basis. Question:
How does your workplace support your Epilepsy?Renee Elliott
: They have been very supportive all along and they are all about early intervention and have been very supportive of my Epilepsy. We did a toolbox the other day about Epilepsy and everybody in my workplace was very supportive and asked lots of questions of me after the toolbox about how Epilepsy affected me on a daily basis.
I also have to be aware of not driving when I am unwell or if I've had a fever because that could lower my seizure threshold. I need to be aware and self-manage any risk. When I go to the pharmacy I need to ask if the medication my doctor has given me will contraindicate with my anti-epileptic medication; most of the medication won't but I have to ask the question. Question:
Are all your friends and family aware that you have Epilepsy?Renee Elliott
: Yes, I am very open about my Epilepsy, I am not ashamed in anyway and I don't believe I attach a stigma to my Epilepsy.
In relation to friends I found, myself that I pushed my friends away and that was out of fear that I would hurt them because I didn't understand who I was at the time. My friendship circle has changed quiet a lot because of Epilepsy and because of geography as I now live in Sydney and a lot of my friends still live in North Queensland and that's evolution. Having said that there was a time where I actively didn't want to make any close connections with people as I was concerned at what Epilepsy was doing to me and I didn't want to hurt others if something happened to me.
Now I am of the opinion that if people want to know me I want to know them and be close to them too and I have a unique and completely different perspective on life now. This is my life and I want to share it. Question:
What have you learnt from Epilepsy?Renee Elliott
: It has been a very unique journey for me, one that I would never have expected but that is because Epilepsy has taught me a lot about myself. The journey that it has taken me on has taught me a lot about humility; the person I was five years ago is not the person I am now. Five years ago I was a very materialistic person and very flashy, I'm not that person now and it's a very positive change. I am more of a giver now than I ever used to be and I don't think I would be that person now if it hadn't have been for this.
Professionally I think I am a lot better now too, I changed my entire career and now I do a job that is more around mentoring and helping young engineers. I am about fostering, helping and growth now and not as much about money. I can see a lot more of a different approach within myself.
Last year I did the Sydney to Surf and I completed it nine months after my seizure. I trained for the event and it was good to finish but it took me a long time to recover. Most people can recover relatively fast after an event but even though I trained for at least six months before the event it still took me a long time to recover and I had major muscle breakdown afterwards and I was extremely exhausted. It was a great achievement and we raised a lot of money for Epilepsy Action Australia. This year I am doing the Bay Run which is another event here in Sydney to raise money.
I also kept a blog during the hard time that I recently found again. There is one Hindu proverb that I lived by during this journey: "Endurance is one of the most difficult disciplines, but it is to the one who endures that the final victory comes." For me it rings more true now (four years later) than it ever did when I wrote it on one of my blogs at the beginning of 2008.
Interview by Brooke Hunter