The community is being encouraged to wear purple on Tuesday, March 26, to mark International Purple Day and help raise awareness of epilepsy.
Amanda Anderson was diagnosed with epilepsy when she was 23 years old – but it wasn’t an ordinary diagnosis.
The Gisborne resident said her first seizures weren’t typical.
“We weren’t really sure what they were … I was just staring off, unconscious, so I didn’t know what was going on,” she said.
Ms Anderson, 38, said that when more seizures struck, she decided to see a neurologist.
“It didn’t look like typical epilepsy, as in what people think epilepsy is, which is the jerking,” she said.
“I had those, too, but to start with, [I] was just staring off and I wouldn’t remember anything … it looked like I was day dreaming.”
Once she was diagnosed with epilepsy, she was prescribed medication.
But her husband, James Anderson, said the medication was not as effective as they wanted.
“It wasn’t actually stopping it all together – it was controlling it, but we didn’t realise it at the time,” he said.
“When Amanda went off medication and tried some natural therapies, it actually then showed the full extent – that she was having these full blown seizures.”
Ms Anderson said: “I started to have the tonic clonic seizures, which is what you think of with epilepsy – so the jerking and you’d bite your tongue and your cheeks … they’re pretty awful.”
More than four years after her diagnosis, doctors at the Monash Hospital found scar tissue on her right temporal lobe. It was recommended she undergo brain surgery.
“I had a newborn at the time and I was like, ‘No way am I having neurosurgery’,” she said. “But the seizures got worse and eventually I said, ‘OK’. It’s a big thing because it’s brain surgery – especially since I just had a baby.”
Looking back at her brain surgery nearly nine years on, Ms Anderson said it was the best decision she could have made.
“It changed everything,” she said. “I’ve only had a few seizures since then … it was definitely life-changing.
“In 2014, I did a bachelor in social science psychology … now I work for a company called PS My Family Matters, so we look after the carer for someone with mental health problems.”
