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Purple Day, the international day for epilepsy awareness is celebrated each year on March 23rd. At UHN, Purple Day events are organized by Epilepsy Toronto and staff in the Krembil Neuroscience Centre's Epilepsy Program, located at TWH. This partnership has led to several initiatives that aims to provide epilepsy patients at TWH with both medical and support services.
Epilepsy is a neurological disorder that affects approximately one in 100 Canadians. Although the condition itself can largely be managed with medication for most patients, there is a psychosocial aspect of epilepsy, which requires other supports and services.
Epilepsy Toronto, a support and advocacy group for patients and caregivers, has been in a partnership with the KNC Epilepsy Program for six years. Rosalee (Rosie) Smith, Director of Adult Services at Epilepsy Toronto is vital to the care of patients in the epilepsy program. She comes to TWH once a week for patient support meetings both in the clinic and the epilepsy monitoring unit. Unfortunately, there is still a significant amount of stigma attached to epilepsy - seizures can cause a physical respond that can be alarming to see and as a result many people have a negative perception of those with epilepsy.
Even with today's medication, epilepsy can be difficult to control completely. People with epilepsy can face discrimination in the work place, bullying at school and isolation due to fear of having a seizure in public.
"This link between community support and hospital care is critical," says Rosie. "Not only are we able to better connect with patients, who might have otherwise have missed out on our services, but it lends a lot of credibility to our services to be associate with the medical community. We are able to go to work places, schools and speak with a patient's community, to help provide people with a better understanding of what epilepsy is and to dispel the myths."
In addition to the ongoing collaboration around patient care at the hospital, Epilepsy Toronto and the Krembil Neuroscience Centre also partner on an annual epilepsy conference for health-care professionals and patients. Epilepsy Toronto also works with staff to host two information sessions a year at Toronto Western Hospital for patients and caregivers.
"Connecting patients with each other is also a big part of helping to break the isolation that often comes with having epilepsy," says Rosie. "Just recently I put a mom with a new baby in touch with other mothers with epilepsy and now she realizes she is not alone in her experience."