With Epilepsy Awareness Day taking place on March 26, one Central Coast resident who lives with the condition has praised Social Futures for the support it offers.
Epilepsy can affect anyone, at any age, and is still widely misunderstood.
Supporters are invited to wear purple on March 26 for Purple Day, a global grassroots event formed to increase worldwide awareness of epilepsy and to dispel common myths and fears surrounding the neurological disorder.
Central Coast resident Georgia, 34, has two types of epilepsy; Tonic Clinic Epilepsy – which causes the grand mal seizures; and Medication Resistant Focal Epilepsy.
This means that no matter what she does, or what medications she tries, the seizures are unlikely to ever leave her.
For years she found herself bounced between doctors and specialists without answers or support.
“They didn’t understand what was going on in my body, in my brain,” she said.
“I just kept hitting brick wall after brick wall after brick wall.
“You became a number to everyone; you weren’t treated like a human – that was really horrible.”
At one time Georgia was having upwards of 50 seizures a day, and while currently that figure is closer to 10 seizures in a 24-hour period, there is no guarantee they won’t increase.
The seizures, besides being frightening, have also led to memory loss.
“I would be talking to someone, and I would have a seizure,” she said.
“It is as if you’re in the middle of a conversation, you walk out of the room for two seconds, and when you come back you have no memory of that conversation.
“Being able to communicate with people was difficult.
“I would want to discuss things with my husband or family, and they would say, ‘we’ve had these conversations, we made a decision on that’ and I wouldn’t remember.”
Georgia went from pursuing a career and a degree in childhood education, to being unable to think of what word to use or how to use it properly.
“I went down the path of a lot of mental health problems, but no one passed me onto mental health support; there was no medication or intervention,” she said.
“Suicidal ideation was huge.”
Georgia said it was hard to summon the courage to make her first call to Social Futures, but since she did, she hasn’t looked back.
Social Futures, an NDIS partner, works with people with disability, their carers and their families to help them to understand and access the NDIS and to link them to information, support and services in the local community.
They put Georgia in touch with senior local area coordinator Kristin.
“When I got in contact with Kristin, she just treated me with so much dignity, like I was a human,” Georgia said.
“It felt as though she would do anything in her power to help me get the help I needed.
“To feel that I was worth the time and the energy and the care – that I was important.
“I hadn’t had those feelings for a really long time.”
Kristin is assisting Georgia to apply for NDIS funding and has also linked her with other supports including specialist support groups and programs for both herself and her family.
“She helped me with a mental health care plan, what to ask my doctor for; she helped me with a companion card, because I am never alone, so that person was able to come with me,” Georgia said.
She said being connected with support groups who understand her journey has been life changing.
“Just being with like-minded people so that aloneness isn’t there anymore,” she said.
“You feel like you’re part of a greater community, and being able to talk to people helps.
“Having Social Futures on our side means that I don’t really need to worry.
“I know that Kristin is there and if I need anything I can talk to her; it’s great just having that one point of contact.
“I am a fighter; I will just keep going.”
More than 800,000 Australians will develop epilepsy during their lifetime and for more than 50% of those people, the cause will remain unknown.
Epilepsy is more prevalent than Parkinson’s Disease, Cerebral Palsy, Multiple Sclerosis and Muscular Dystrophy combined.
For more information on how Social /futures can help call 1800 522 679 between 8.30am and 4.30pm Monday to Friday or email socialfutures@ndis.gov.au
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