Women with epilepsy face some different issues to men with epilepsy. Many women find that their seizures are affected by hormonal changes. This can make puberty, menstruation, fertility and menopause more challenging. Will you help us shine a light to support girls and women with epilepsy? Read more about some of the challenges faced in our latest fundraising campaign, and if you can please make a donation to support Epilepsy Action Australia’s services.
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When their baby daughter Amelia was a few months old, Aimee and Warren started noticing her face would go blue and she would make sudden, jerky movements. They knew something wasn’t right.
After months of tests and around 20 medications, Amelia was diagnosed with intractable or drug-resistant epilepsy. But her family’s harrowing journey was only just beginning.
Over several years, Amelia underwent three brain surgeries to try and locate the source of her increasingly violent seizures. Each time, there was great hope they would find a cure – or at least significantly lessen her seizures.
Sadly, none worked. When Amelia was about six, her family made the tough decision not to continue down the pathway of more surgeries.
“We wanted to work out how we can help Amelia and make sure she has the best possible day-to-day life and be there to support her on her journey.” – Aimee, Amelia’s mum
Now 14 years old, life is changing for Amelia. In some ways, she’s a typical teen – she loves listening to music, dancing and hanging out with her best friend, Jackson.
But she has developmental delay and learning difficulties which means her parents are still very hands-on when it comes to basics, like helping Amelia get ready for school. On top of this, the onset of puberty has made her seizures worsen – and she is developmentally unable to manage the physical needs of having a period.
We know that there’s a huge gap in people’s understanding of how epilepsy can impact young girls and women.
At Epilepsy Action Australia, we’re determined to help bridge that gap – but we need your help. As a community funded organisation, we rely on people like you to help us fund our critical information and support services.
Will you help us today with a donation so we can be there for families like Amelia’s, when they need us most?
Today, there are around 134,000 women and girls aged between 10 and 85 with epilepsy in Australia. For them, hormonal changes such as puberty, pregnancy and menopause may create significant health problems that are different from those experienced by boys and men.
Not just increased risk of seizures, but also depression and anxiety, difficulties with pregnancy and childbirth, osteoporosis, bone fractures and early death.
But information on how women can better care for themselves or manage their changing condition are still not well understood or talked about.
Epilepsy Action Australia’s newest Ambassador, Mindy Russell (also now an elected Councillor in Logan, Queensland) has had epilepsy since her early 20s, triggered by a benign brain tumour. As a young mum and an ambitious local politician, she had to navigate her epilepsy while raising a child and doing a highly demanding job.
Mindy has firsthand experience of the challenge to find accurate and meaningful support for women’s issues from medical experts. Now, navigating life in her 40s, she is concerned about facing the prospect of perimenopause without starting to have seizures again.
I believe that women like Mindy and girls like Amelia deserve better.
At Epilepsy Action Australia, we’re on a mission to shine a light on the experiences of women and girls with epilepsy.
We provide a range of practical resources specifically for women, and we also held our first EmpowerHer conference in Brisbane this year, which focused on women living with epilepsy.
Warren and Aimee are determined to ensure Amelia has a secure, loving and happy life. Women like Mindy are urgently seeking answers to help them better protect their health, relationships and their future.
You make it possible for Epilepsy Action Australia to be there for them. You can read more about how your support makes a real difference in the attached excerpt from our 2024 Impact Report.
Please give a gift today so we can help girls like Amelia and women like Mindy live their best lives.
Thank you for your support,
Carol Ireland
CEO and Managing Director
