Given the high number of Ontarians living with epilepsy, there needs to be an effective action plan to support the quality of life of people affected by the neurological disorder, says Miranda Zeppieri.
Zeppieri, 28, knows this first-hand — she has had a seizure disorder caused by tuberous sclerosis her whole life, and this is why she’s supporting the province’s proposed epilepsy strategy.
As part of the strategy, which was designed by an expert panel, epilepsy care centres with state-of-the-art equipment would be established provincewide and would serve as primary access points for people with epilepsy. Through these facilities, patients would have access to epileptologists, psychologists and social workers. The sites would be equipped with the latest in epilepsy monitoring and imaging equipment.
In short, Zeppieri says the establishment of these care centres throughout the province would provide people living with seizure disorders quicker access to the supports and medical attention they need.
To put Zeppieri’s situation into perspective, she has had to travel the 130-km distance from her home in Peterborough to Toronto throughout her life to receive certain medical treatment and supports.
Having a care centre in the Peterborough area would alleviate that issue and enhance her life quality, she says, adding that accessibility is especially important given that one in 100 Ontarians is living with epilepsy.
“Those who are currently living with this issue are forced to do so without any supports, including something to assist with their quality of life,” says Zeppieri.
“Epilepsy is a very serious neurological disorder that needs to be recognized by the Canadian government as quickly as possible in order to give those affected a fighting opportunity.”
Zeppieri adds that by adopting the proposed epilepsy strategy today, the Ministry of Health and Long-Term Care would be taking action proactively by stemming issues related to providing needed interventions in the long-run.
For the past 11 years, Zeppieri has been involved with the epilepsy community, advocating for herself and others affected by the disorder, largely because Peterborough is a fairly small centre with relatively few people around who shared her experiences with epilepsy.
One place Zeppieri says she could find some of the help she needed was through her local epilepsy support agency. However, without a provincial strategy in place, she fears some of these agencies could eventually cease to exist.
“Right now we’re fundraising just to keep the doors open,” she says, adding that with a sustainable provincial epilepsy strategy the funding would help keep the centres open and fundraising proceeds could be directed at other areas.
To become involved, please contact OHTAC at OHTAC_Comments(at)hqontario.ca to share your thoughts about the need for a provincial epilepsy strategy.
If you have feedback on this story, please call the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca.
Writer: Deron Hamel