Can you lead a full life with Parkinson’s, epilepsy, or attention deficit disorder? Hear from three people who are doing just that:
Whitney Goulstone — who had a new kind of surgery to halt her epilepsy. Andy Barrie — who underwent deep brain stimulation to ease his Parkinson’s Rick Green — who uses his ADD as an ally and empowers others to do the same.
Date: Tuesday, March 24, 2015 Time: 6:30 PM to 8:00 PM (EDT) Location: Bloor Hot Docs Theatre 506 Bloor Street West at Bathurst, Toronto
Deanna Sinasac has worked tirelessly to raise epilepsy awareness in Amherstburg, Ont., especially among students and staff at her daughter’s primary school.
Her daughter, Alexis, is a Grade 4 student at Amherstburg Public School. She also has epilepsy. But because of her mother’s efforts to raise epilepsy awareness at the school, staff and students have a better understanding of what it’s like to live with a seizure disorder, as well as how to help Alexis if she has a seizure.
Former Amherstburg mayor Wayne Hurst is seen here at a ribbon-cutting ceremony to proclaim Purple Day in the town on March 26, 2014. Deanna Sinasac (far left), who organized the event, is seen here with her daughters, Mackenzie and Alexis. Also pictured is Nikki Porter, formerly of the Epilepsy Support Centre (far right).
While Sinasac advocates for her daughter throughout the year, her efforts every Purple Day help bring the most awareness. Held every March 26, Purple Day is an internationally recognized day aimed at raising epilepsy awareness.
For the past few years, Sinasac has organized Purple Day events at her daughter’s school. She has baked purple cupcakes and raised money for the Epilepsy Support Centre. She also organizes school assemblies where Epilepsy Support Centre representatives come to speak with staff and students about seizure disorders.
Many students and staff members also dress in purple clothing in honour of Purple Day.
“With more education, (the students) are more accepting – and I hope they are less afraid,” Sinasac says. “A lot of the kids were scared (when they saw Alexis have a seizure) for the first couple of years, but I find that by (engaging the students) it brings more awareness.”
Sinasac’s work has paid off. She says she’s seen a change among students and staff. Students, especially older students, have become interested in learning about seizure disorders and what they can do to help someone if they have a seizure.
The school’s staff members, whom Sinasac says are “wonderful,” are also eager to learn more about epilepsy, and they show full support for Purple Day activities.
“By having Purple Day at the school, it gets the whole school involved,” Sinasac says. “Hopefully, they can take what they learn out of the school and educate their parents and others.”
And it’s not just Alexis’s school where Sinasac is trying to raise awareness; she wants to expand Purple Day activities and epilepsy awareness presentations to other schools in Amherstburg.
“I’m going to keep proceeding with it,” she says. “I’m not just doing this for Alexis; I’m doing this for everyone who has epilepsy.”
Writer: Deron Hamel
If you have feedback on this story, or have a story of your own that you would like to share, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.com. You can also leave a comment below.
The federal government announced Feb. 10 that Canadian pharmaceutical companies must post all actual and anticipated medication shortages in coming months, a move that is welcomed by the epilepsy advocacy community.
Drug shortages have affected the epilepsy community in recent years. In January 2013, it was announced that clobazam, an anticonvulsant medication, was in short supply. This caused great concern among people taking clobazam to control their seizures, as many had no other medication options.
Suzanne Nurse, chair of the Canadian Epilepsy Alliance’s drug shortages committee (front row, far left) joins federal Health Minister Rona Ambrose (front row, right) on a tour of the pharmacy at Vancouver General Hospital. (Photo courtesy of Health Canada)
For several years pharmaceutical companies have been able to voluntarily post medication shortages online at Drugshortages.ca, however, the limited response was not satisfying many in the health-care community, according to consultations conducted by Health Canada last summer.
“This kind of activity and behaviour has to stop,” Health Minister Rona Ambrose said during a press conference in Vancouver, where the announcement was made.
Suzanne Nurse, an epilepsy information specialist and chair of the Canadian Epilepsy Alliance’s drug shortages committee, was in Vancouver for the announcement. She says medication shortages can cause serious health and safety issues for people living with seizure disorders, so the announcement is a step in the right direction.
During the 2013 clobazam shortage, the supply was already dwindling by the time the manufacturer reported the issue, which caused those requiring clobazam to scramble to find pharmacies with extra supply.
With mandatory reporting of current and impending medication shortages, much of this stress can be alleviated, Nurse says.
“This announcement shows an acknowledgement by the government that there needs to be a mandatory system for reporting medication shortages,” she says in a telephone interview.
“(The system will allow) everyone who is involved in the drug-supply chain, from the manufacturers to the patients, to have a heads-up when there’s an anticipated problem with supply.”
However, the overall impact of the mandatory reporting system is largely dependent on what happens with the information posted, Nurse notes.
The best way the information could be used would be to avert potential drug shortages, she says. Stakeholders, such as Health Canada and drug manufacturers, will hopefully be able to work together to understand the reason for shortages and, if possible, to prevent them.
“If those things happen, then the impact of this is huge,” she says.
Writer: Deron Hamel
If you have feedback on this story, or have a story of your own that you would like to share, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.com. You can also leave a comment below.
Sept. 4, 1990 is a day that’s etched into Steve Rutledge’s memory.
This was the day Rutledge received neurosurgery to address his epilepsy. It was a day that proved to be a turning point in the life of the father of three who had, until then, lived with epilepsy for more than 10 years.
Rutledge has been seizure-free since that day. He knew he was taking his chances when he agreed to have the procedure. He was warned the operation might not work. He was told the recovery process would be long and he would experience side effects, like frequent headaches.
Still, he had to take his chances, and today he’s glad he did.
Steve Rutledge (far left) poses with his family in this photo. Rutledge, who had lived with epilepsy for more than a decade, has been seizure-free since undergoing neurosurgery in 1990.
Rutledge began experiencing seizures at around 12 years old, when he was in Grade 7. His family noticed a change in him; he would say words and phrases that seemingly came out of nowhere – and leaving him with no recollection of these episodes. It was at this time he was diagnosed with epilepsy.
Over time, the seizures became more frequent, and by the time he had his surgery, when he was 24, Rutledge was having up to seven seizures a day.
His epilepsy had become unpredictable. He would go as long as 18 months without a seizure, but then the seizures would start again. His doctor would prescribe medications that worked for a time, but then the seizures would reoccur.
At this point, Rutledge had enough. He approached his doctor to discuss possibilities to end the seizures – for good. His doctor suggested he might be a candidate for surgery. Despite warnings the operation might not work, it was a chance Rutledge was willing to take.
Seizure-free for nearly 25 years, Rutledge, a Woodville, Ont. resident, underscores the importance of people living with epilepsy talking with their physicians about surgical options to end their seizures.
Additionally, Rutledge says it’s important for those living with epilepsy to educate those around them – family, friends and workmates – about their condition so they can understand it. This, he says, allowed him to pursue interests in his youth, particularly sports, without fear of being ostracized.
Being seizure-free has also encouraged Rutledge to become active in helping people with epilepsy and raising awareness of the condition. He is a volunteer with Epilepsy Peterborough and Area who helps organize events to raise money and, more importantly, he says, raise awareness of epilepsy.
“I am trying to make more people aware of what epilepsy is and how they can help not only themselves but people around them,” he says. “After all the help that I got, I want to give something back.”
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