Our organisation was developed in response to the lack of community, peer-to-peer support and general knowledge sharing which contributes to the social isolation and diminished well-being common to people with epilepsy.
Presently, there are approximately 125, 000 women living with epilepsy in Australia, and a further 6,000 women are diagnosed every year.
An epilepsy diagnosis is a significant moment in anyone’s life, however epilepsy in women has significant additional challenges.
Laura, Australian Women with Epilepsy community member
Our vision is to connect and improve the quality of life, mental health and services for all women living with epilepsy in Australia, and eliminate stigma associated with epilepsy within the wider community via accessible education and awareness.
Epilepsy in women.
Hormones fluctuate with puberty, menstruation, pregnancy and menopause, which can significantly impact epilepsy and seizure management for women. Contraception and epilepsy medication can interact with each other reducing their efficacy, and pregnancy can be a particularly stressful experience with increased risks of seizures or medication causing harm to unborn babies.
Living with this incurable brain disease can also lead to a higher prevalence of:
- social isolation,
- financial hardship,
- mental health disorders,
- strained relationships and
- employment discrimination.
The Australian Women with Epilepsy community provides a safe space, specifically for women diagnosed with epilepsy, where we can discuss our unique challenges and needs. We strive to connect all women living with epilepsy across Australia by providing peer support with empathy and deep understanding.
We know how much easier living with epilepsy can be when you have the right knowledge and support networks to manage your day-to-day life.
Some quick facts about us:
- Australian Women with Epilepsy was established in August, 2020
- The organisation was founded for and by women living with epilepsy
- We are a registered Health Promotion Charity with the ACNC, including DGR status
- Our organisation is currently completely managed and run by volunteers, primarily women living with epilepsy
- We strive to Connect, Support, Validate, Educate & Empower all women living with epilepsy in Australia
We're working to ensure that:
- All women have access to peer support services, wherever they are in Australia
- Women with epilepsy are empowered via validation, education and connection
- Accessible and tailored epilepsy resources are available to women living with epilepsy
- Communication channels between the epilepsy community and health professionals are improved
- Understanding of epilepsy in the wider community in improved
Members at Victorian peer support meet up, 2021
Our current activities include:
- Online and face to face social outreach and peer-support groups for women living with epilepsy
- Online education and events (webinars, info-sessions, info sheets, eNewsletters and social media)
- Knowledge sharing and community awareness programs across our media platforms and affiliate platforms
- Producing tailored health promotion and educational materials
Lyn, Australian Women with Epilepsy supporter.
For further information you can contact us via email.