Kathleen Taminiau is a woman with a mission. She wants to remove the stigma about the condition that killed her husband two years ago.
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She and Isreal had been together since their schooldays. She says they met and fell in love when she was 17 and he was 24. He had been diagnosed with epilepsy two years earlier.
On April 10, he had a seizure and then a brain hemorrhage. Three weeks later, on May 2, in a coma in the intensive care unit of John Hunter Hospital in Newcastle, he died. They had discussed what to do in such a situation. There was no unnecessary prolongation.
He was 41 and they had been married for nearly nine years.
And that’s why she feels so strongly about March 26 which has been designated as Purple Day, a day to wear the colour purple in solidarity with those who suffer from the condition and in solidarity with their families.
There is a stigma through false beliefs. One of these is that it’s a mental illness. It’s not – it’s just a misfiring of the circuitry of the brain, a bit like a temporary electrical malfunction. All the same, Kathleen knows of a teacher about whom a parent complained needlessly.
To counter false perceptions, Kathleen has organised a string of events in her home town of Glen Innes. “I want people to have conversations about what epilepsy is to try to reduce those false perceptions in the community and to de-stigmatize it.”
Part of the stigma comes because a fit can be very unsettling, obviously for the person who suffers it but also for bystanders who simply don’t know how to react when someone falls over and is quaking on the floor.
Kathleen said that “the most important thing to do is to make sure the person is safe. Grab something soft to put under their head. If they've fallen to the ground. Turn them over on their side to maintain their airwaves.
“And if you can, time the seizure. Anything from 30 seconds up to five minutes is quite normal for that seizure activity to occur. Anything beyond that and they should call an ambulance.”
But these seizures are rare. Seventy per cent of people who have epilepsy (estimated to be about three per cent of Australians) keep the condition under control through medication or diet. Thirty per cent can’t and are subject to fits.
There will be events near you. Kathleen says: “I would love everybody to get on board and to wear purple.” Epilepsy Action Australia’s website is at www.epilepsy.org.au where you can find out more.
I would love everybody to get on board and to wear purple. I want people to have conversations about what epilepsy is to try to reduce those false perceptions in the community and to de-stigmatize it.
- Kathleen Taminiau