Meet Emma, chief executive of Epilepsy WA whose long-standing involvement with epilepsy motivates her to encourage community discussion and support!
How did you find out about the issue of epilepsy?
"Ten years ago, I worked for Epilepsy Queensland, so epilepsy has always been a cause close to my heart. I also have loved ones who have epilepsy - and a young niece who had a stroke - so I am all too well aware of how epilepsy can impact lives."
What is the greatest motivation for you to work towards addressing this issue?
"For me, I have always wanted to put my energy and passion into causes which help the wider community.
Moreover, epilepsy is really misunderstood, and there is still much stigma which revolves around the condition - which is actually quite shocking as epilepsy is very common. We need to bring epilepsy out the shadows and destigmatize it."
What have you find the most satisfying aspect of working at Epilepsy WA?
"The most satisfying thing is knowing that I’m helping. Together with our members and supporters, we are making a difference and raising the profile of the condition of epilepsy and Epilepsy WA. It is crucial that we educate people on how common epilepsy is, and knowing how they can support people living with epilepsy.
As a community, we should be applauding those living with epilepsy for their bravery, and for the way they are managing what can be a very challenging condition. They not only cope with the effects of (uncontrolled or controlled) seizures, but also medication side effects and lifestyle modifications which influence everyday living."
What would you most like the public to know more about epilepsy?
"I think it is important that people realise that epilepsy is really common - but rarely spoken about.
We need to destigmatize epilepsy as it is the most common neurological condition in the world. Epilepsy is not a mental illness: someone living with epilepsy does not have a low IQ."
Importantly, I would like to raise awareness of the 1 in 200 children living in epilepsy, and improve the quality of life for those touched with epilepsy. Notably, I would like to promote greater community knowledge of seizure first aid. Every single household in WA should know this, because the reality is that 1 in 10 of us will have a seizure in the space of our lives."
What general support does Epilepsy WA provide for people with epilepsy?
"Epilepsy WA provides an array of support services, with no government funding. We provide 4 peer-to-peer support groups through the Perth Metro area, and recently extended such support to more regional areas (Bunbury, Manjimup and Rockingham). These groups allow people living with epilepsy to gather together with others in the same situation, alongside carers of those living with the condition. Because of this, they can seek valuable support from those walking in similar shoes. These support groups are also facilitated by professional facilitators.
We also have an information line, while providing educative programs including seminars, training and a newly-established schools program to shed light on the common condition of epilepsy.
All the support we provide we do so through generous donations we receive, but unfortunately funding is always a challenge. "
What elements of Epilepsy WA could be more fully established with increased funding and community awareness?
"It’s a really exciting time in the organisation’s history as we have just launched the schools program, hoping to reach out to over 1,000 school in WA. As mentioned before, epilepsy is very common amongst young students as 1 in every 200 children will have epilepsy - meaning that nearly every school will have one or more children living with the condition.
What we want to do is educate the teachers and school community in order to best support those children. Overall, we want to break down the barriers, fears and misconceptions of epilepsy that currently exist - which sometimes make people afraid to be open about their diagnosis of epilepsy."
How do you think Purple Laces Month will be beneficial?
"Anything that increases the profile of epilepsy - and makes our community think and talk about the condition - is a great thing.
I am particularly excited about Purple Laces Month as I see it becoming an annual initiative. It would encourage people to talk and share about their stories of epilepsy, and reduce their fear of supporting others living with epilepsy."