De 50 crises par jour à zéro: une survivante de l'épilepsie aide à lutter contre la stigmatisationoctobre 20, 2019
Posted October 01, 2019 07:27:56
Daniel Bradshaw experienced his first epileptic seizure at eight years old.
- New research by Epilepsy Tasmania has found the state has the highest rate of epilepsy in the country
- 20,000 Tasmanians are living with the disorder — with more than half saying they have experienced workplace discrimination
- The disorder costs the state government and individuals $11.8 million dollars per year
Without strong medication, the now-father of two used to suffer between 40 to 50 seizures a day.
« It’s dramatically impacted my life, particularly with children, when you think you’re on the verge of having a seizure, it’s difficult. We were really over-medicating me just to stop me having seizures, » he said.
Epilepsy is a chronic disorder of the brain that is characterised by abnormal electrical activity causing seizures or unusual behaviour, sensations and sometimes loss of awareness.
Fourteen months ago, Daniel Bradshaw underwent brain surgery — and has had just one seizure since.
« They took a five millimetre cut of soft tissue out of the cleavage of my brain, in between the left and right hemispheres — that was meant to be the epicentre of my epileptic activity, pretty amazing. »
He said the surgery was his only option for a normal life.
« It was a necessity: if we didn’t have surgery we probably would have over-medicated me to the point of really, really being dopey. »
Mr Bradshaw is one of about 20,000 Tasmanians living with the disorder.
New research by Epilepsy Tasmania has found the state has the highest rate of epilepsy in the country.
Chief Executive Wendy Groot said for every Tasmanian with epilepsy there are approximately 4 others providing care and support.
« It’s a significant burden, costing the state government and individuals $11.8 million per year, more than prostate cancer and comparable to lung cancer and Parkinson’s disease. »
« It is a fifth of Tasmania’s population — and that’s higher than other states purely because of the issues that exist in Tasmania in terms of our socio-economic issues, our older demographic. »
Wendy Groot said in schools, epilepsy is now the third most common health condition, after diabetes and asthma, and followed by anaphylaxis.
Unfair treatment for sufferers
Despite its prevalence, the research by Epilepsy Tasmania reveals a lack of awareness amongst the community.
Fifty-two per cent of Tasmanians with epilepsy have experienced workplace discrimination, compared to the national average of 47 per cent.
Wendy Groot said Epilepsy Tasmania had been made aware of plenty of examples of people being treated unfairly.
« We’ve had an example of a person who disclosed in their workplace that they had epilepsy and just following that they started getting a reduction of shifts. »
Daniel Bradshaw said he had regularly experienced a lack of understanding.
« There’s definitely a stigma, I think it’s because it’s something mental, rather than something physical, you can’t really see it. »
The father of two says it has also limited his employment opportunities.
« The effect of not having a driver license has had a massive impact on my life, I think maybe 50 to 60 per cent of jobs require a license. »
Workplaces urged to become ‘epilepsy-friendly’
Wendy Groot said the new research showed urgent actions were needed across Tasmania to promote epilepsy as a public health priority to reduce its burden and improve public attitudes.
Epilepsy Tasmania will run an advertising campaign during October to remind Tasmanian workplaces of their responsibility to provide staff and customers with a safe environment, to learn seizure first-aid and to prevent discrimination.
TasWater recently implemented a statewide training program to raise awareness about the disorder.
TasWater’s Kylie Leard said it was welcomed, with about 70 employees taking part.
« We recognised we had employees with epilepsy within our organisation that had epilepsy and or cared for someone with epilepsy. »
She said it helped people to open up about the condition.
« People started talking more about it and sharing their own personal stories, so it was very well received. »
Epilepsy Tasmania is hoping the research will encourage other workplaces to do the same.