Meet Lauren, Community Coordinator for Epilepsy WA, whose passion has led her to do amazing work in facilitating epilepsy support groups around WA!
Lauren, how did you first discover Epilepsy WA?
"The first I heard about Epilepsy WA was when they were advertising for a community coordinator on Seek. I'm an occupational therapist and I worked in mental health and neurology over the past 20 years -gosh, that makes me old, doesn't it?
I always have been interested in the brain. What really inspired me to take my job seriously was I did an online course to learn about epilepsy and what it all meant. The thing that really stood out for me was the statistic that up to 40% of the people will never know why they have epilepsy. And that for me was quite horrifying: the fact that something that had such an impact on the individual and their family, which deprives you of so much... to not know why was horrible.
It really inspired me to want to support those experiencing epilepsy and to also perhaps be a part of the process that led to a greater understanding of why."
What motivates you to work towards this cause?
"Where I find my joy is caring and nurturing for others. So for me, I'm in a fantastic position to have the chance to hopefully - when I come into contact with someone - change their life in even a small way. Pointing them in the direction of where they can find support or resources, [plus] being an understanding ear and a voice of care is very important."
What is the most satisfying aspect of your work with Epilepsy WA?
"I love the team that I work with. We are a very small team, small charity - but I am incredibly blessed to work with fantastic people.
The most satisfying aspect is the ability to support and make a difference in somebody else's life. Something as simple as knowing where to find support, and providing an opportunity for someone to connect with others who have a shared life experience... it's a real privilege and something I am really proud to be able to do."
What do you think Purple Laces Month might be beneficial to someone with epilepsy?
"I think the key is awareness. Epilepsy has been documented for thousands of years, but unfortunately, it's always been seen as something of fear, or something misunderstood. As it is a disorder with the brain, there is so much that is unknown. And I think unfortunately often the public doesn't understand what epilepsy is and the greater aspect: the impact of epilepsy.
So anything we can do to raise awareness, to bring it to the forefront [is valuable]. 1 in 200 students experience epilepsy: a huge number, which probably means that at least one student is experiencing epilepsy in most schools. And yet so little is said, so little is known.
For example, if kids have absence seizures, they are often considered to be lazy, daydreaming or not engaged when they are actually having seizure. For those who perhaps don't understand it, it's really frightening to watch, it's something that's really scary. So there is an element of fear for a start, there is an element i think it's almost semi-paralysis: where if you don't know what to do, you don't do anything.
Another interesting thing that fascinates me is that the age group with the fastest growing rate of diagnosis is actually those over 60's. As we have an ageing population, the dynamics in our society change. People need to be mindful and be aware so that if something does happen to a parent, a partner or a loved one, they know what to do."
About seizure first aid... it's not difficult. It's about keeping the person safe, staying with them, reassuring them, and timing the seizure. There isn't a huge amount needed to be done. Hopefully... it becomes something that is common place."
What other elements of Epilepsy WA could be more fully established through funding?
"Oh, we may be small but we are mighty; we've got big dreams.
There's a lot that we really want to do - more support groups certainly. At the minute, we run 4 metro area support groups, 1 in Manjimup, 1 in Rockingham, and now 1 in Bunbury. Of course, WA is such a big state so with more awareness and more funding we would be able to set up and run more support groups, which are incredibly important.
I'd also really love for us to have a national or statewide campaign on seizure first aid. This would educate people on what to do if someone has a seizure - so that we can eliminate some of that anxiety on their behalf, while providing understanding and safety for the people who experience epilepsy.
This would bring the word 'epilepsy' to the forefront of people's minds, and also facilitate a discussion in which epilepsy is better understood, in which people don't feel so alone, or isolated. We can dispel myths that people with epilepsy are mentally deficient, or dispel the fear around what to do if someone has a seizure. Again, in actual fact, seizure first aid is quite basic.
So I guess that for me is the greatest goal: it's about that normalising, it's about recognizing that, "yep, you've got epilepsy - but that doesn't define who you are." It's like asthma - it's like any illness or disorder - and that understanding and compassion is so so important."