EVERY year about 150 Australians die from Sudden Unexpected Death in Epilepsy.
SUDEP often strikes when a person is sleeping, as was the case with 39-year-old olympian Florence Griffith-Joyner.
“There is still a lot that is not known about SUDEP, which is considered a rare but very real phenomenon which doesn’t always follow predictable patterns,” Epilepsy WA head Emma Buitendag says.
About 300 Australians die every year in epilepsy-related incidents, including drowning, uncontrolled seizures and suicide.
Epilepsy WA is campaigning to raise awareness.
“As well as taking medication as prescribed and identifying seizure triggers, those living with epilepsy should opt to take showers rather than baths, never swim alone, consider sharing a bedroom or use a seizure monitor alert or listening device to help ensure their safety,” Ms Buitendag says, adding that
“Diet and plenty of sleep are also important.”
More than 26,000 West Australians live with epilepsy, including North Fremantle resident Hayley Gilich, who was diagnosed 15 years ago, aged 35.
“I probably had seizures leading up to my diagnosis, but they were below the level of being spotted.”
Identifying causes of a seizure is an important step in reducing them, says Ms Gilich, who works as a medical scientist.
Heat is one of her triggers: “And some of my biggest have been at the time of intense emotion.”
Ms Gilich became a counsellor, volunteering one day a week at Epilepsy WA.
“There’s only so far you can go speaking about it to people who don’t have epilepsy, including a neurologist.”
Epilepsy WA – which relies on donations – has support groups, an Epilepsy Smart schools accreditation program, a seizure alert display and a free seizure alert bed mat loan program.w
For more info go to epilepsywa.asn.au or call
By JENNY D’ANGER