This Saturday, March 26, is International Epilepsy Awareness Day, Purple Day, and Australian Women with Epilepsy (AWE) is launching its first education and awareness campaign.
“Kickstart the Conversation” is the brainchild of Ella Meredith and Laura Maguire, two Melbourne women with epilepsy who met by chance on social media.
They formed AWE as a peer support network that now has 3,000 members. AWE is where women with epilepsy exchange information to improve their well-being and reduce health risks.
Epilepsy affects more than 125,000 women and one in 25 Australian women every day.
A diagnosis is a major moment in any life, but epilepsy in women presents serious additional challenges. Puberty, some forms of birth control, and pregnancy can have a huge impact on seizure management. There may also be an impact on unborn babies.
In a broader sense, epilepsy can lead to a higher incidence of social isolation, mental illness, strained relationships, and discrimination in the workplace.
“It’s very difficult to navigate dating when you have epilepsy,” Ms Meredith said. “Potential partners can sometimes be scared at the idea. Even if they aren’t, you feel so scared from previous experiences that you’re extremely reluctant to tell them.
“There is 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 they might seeing you in this ‘state’… It’s never 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 just 22 when she was diagnosed, says that even 10 years later there are so many questions about living with epilepsy that unfortunately “have gone through the gaps in the system of Australian health”.
“Medication management is very important, but for many women, knowing what to say to a new employer, friends, family or a new partner is also very important.”
As part of the campaign, AWE has created two Kickstart the Conversation toolkits – daily guides that women can use to help them introduce epilepsy to new partners and employers.
There is also a toolkit for employers, so that workplaces can learn about how best to 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 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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