Presently there are an estimated 125,000 women with epilepsy in Australia. The impact on the individual and their networks can be significant and lifelong with a high prevalence of co-morbidities.
What drives us?
For those who live with epilepsy, the condition can be debilitating and have serious adverse effects on their personal life, ability to maintain employment, and quality of sleep. Epilepsy is also associated with several co-morbidities such as depression and anxiety, fractures and neuro-developmental disorders, which can worsen the burden on people living with the condition, their families and friends and those who provide care to them. Epilepsy doesn’t discriminate, being prevalent across gender, age and location.
People with epilepsy experience higher than average rates of isolation and reduced mobility. Often this can be due to the inability to drive, however the reasons are usually complex – uncontrolled seizures, reliance on a carer for transport or safety reasons, a deep fear of having a seizure in public, fatigue from seizures, medication side-effects, unsupportive or hurtful family and friends and sometimes avoiding social occasions where alcohol may be consumed. Studies have shown that people with epilepsy experience both a lower quality of life and life expectancy.
It is recognised that women with epilepsy have unique needs and challenges. Being a woman with epilepsy is not the same as being a man with epilepsy. Hormones can affect the impact of epilepsy. This is especially noticeable when a woman reaches childbearing age and becomes sexually active. Epilepsy can affect sexual development and menstrual cycle, aspects of contraception and fertility, and is really important to consider when you’re preparing for pregnancy and motherhood as there can be complications and additional risks.
Feeling misunderstood, or difficulties talking to others about epilepsy can lead to avoidance of social occasions, and sadly its not unheard of for people with epilepsy to be mocked and stigmatised, or for people to be fearful being in the presence of a person with epilepsy. People with epilepsy not only experience reduced participation in society; workforce participation is also lower. A lack of awareness of epilepsy and seizures has led to unethical and discriminatory behaviour in both HR and the workplace.
From direct experience we know that there is no demographic-specific organisation which addresses the issues uniquely experienced by women living with epilepsy in Australia. Australian Women with Epilepsy will fill the gap to address:
- Lack of Australian based peer support services for women, and opportunities to connect in person
- Poor communication channels between the epilepsy community and health professionals
- Absence of practical accessible resources for wider population
- Limited epilepsy awareness in the community and advocacy to bring epilepsy out of the shadows
- Absence of tailored health promotion and educational materials