This Saturday, 26 March, is international epilepsy awareness day, Purple Day, and Australian Women with Epilepsy (AWE) are launching their first education and awareness campaign.
‘Kickstart the Conversation’ is the brainchild of Ella Meredith and Laura Maguire, two Melbournian women with epilepsy who met by chance on social media.
They formed AWE as a peer support network that today has 3,000 members. AWE is where women with epilepsy exchange information to improve wellbeing and reduce health risks.
Epilepsy affects over 125,000 women, and one in 25 Australians every day.
A diagnosis is a major moment in any life, but epilepsy in women has serious additional challenges. Puberty, some forms of contraception, and pregnancy can all drastically impact seizure management. There can also be an impact on unborn babies.
In a wider sense, epilepsy can lead to a higher frequency of social isolation, mental illness, strain on relationships and discrimination in the workplace.
“It is a really hard thing to navigate dating when you have epilepsy,” said Ms Meredith. “Potential partners can sometimes get scared at the thought of it. Even if they aren’t, you feel so scared from previous experiences that you’re extremely reluctant to even tell them.
“There’s so much stigma and fear associated with witnessing a seizure and when you have epilepsy there is a level of embarrassment associated with telling someone that they might witness you in that ‘state’… It’s never ever like an ‘average’ relationship, unfortunately.”
Despite all this, there has never been an Australian support group dedicated to practical peer support for women with epilepsy – until now.
Ms Meredith, who was only 22 when she was diagnosed, says even 10 years later there are so many questions about living with epilepsy that unfortunately “fell through the gaps of what Australia’s healthcare system provides”.
“Medication management is very important, but for many women, knowing what to say to a new employer, friends, family or a new partner is really very important, too.”
As part of the campaign, AWE has created two Kickstart the Conversation toolkits – everyday guides that women can use to help them introduce epilepsy to new partners and employers.
There’s also a toolkit for employers, so workplaces can educate themselves on how to best support staff with epilepsy.
“If you’re a woman with epilepsy, please reach out to us… we’re here to help you with the practical support and the community you’ve been waiting for,” Ms Meredith said.
You can connect with AWE at @australianwomenwithepilepsy or by visiting australianwomenwithepilepsy.org
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