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Important Survey: People with epilepsy asked to share their perspectives on treatments

August 21, 2014

Epilepsy Ontario is inviting adults living with epilepsy, or caregivers of people living with the condition, to participate in a survey about their experiences with epilepsy as well as treatments for seizures.

The main purpose of the survey is to gather evidence from the group that is the most knowledgeable about the day-to-day reality of epilepsy — those who live with the condition — and share their expertise with the Canadian Common Drug Review.

The survey aims to discover the benefits and limitations people are finding with the treatments they have used as well as to learn about the impact of epilepsy on their life, whether small or large.

The Common Drug Review is a process new medications go through after Health Canada has verified their safety and effectiveness and approved them for marketing.

Health Canada has recently approved Aptiom (eslicarbazepine acetate) for adults who have partial seizures, which are seizures that begin in a limited region of the brain.

The medication is now going through a health technology assessment process, which examines Aptiom from a cost-benefit perspective.

During this process, patient organizations have the opportunity to make a submission on behalf of those living with a seizure disorder, which is why Epilepsy Ontario is asking people for their input.

“Our submission is focused on the implications that come from living with epilepsy and what people’s experiences are with treatments that are currently available,” says epilepsy information specialist Suzanne Nurse.

“We are hoping to hear from people with a wide range of experiences… different seizure types, different responses to treatment — including side-effects — and different levels of seizure control.”

The online survey, which takes about 15 minutes to complete, is available to anyone living with epilepsy who is 18 years old or older. Family members of those living with epilepsy can also take the survey.
Participants do not need to have any knowledge of Aptiom to participate. However, if they have used this drug, Epilepsy Ontario would like to hear from them too.

In addition to the Common Drug Review submission, Epilepsy Ontario may also use information from this survey to communicate the experiences of people living with epilepsy, as well as experiences of their families and caregivers, in future patient evidence submissions for drug reviews or other initiatives.

“We’re looking for information (about) what patients’ preferences are and what their feelings are related to treatment,” says Nurse, adding Epilepsy Ontario is acting as a conduit for the patient voice in the review process.

Adults living with epilepsy or family members who are caring for someone with the condition can click here to participate in the survey.

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.

Epilepsy Ontario, long-term care providers collaborating to enhance resident care

August 14, 2014

Two long-term care providers have agreed to assist Epilepsy Ontario with a survey to help determine caregivers’ knowledge of seizure disorders.

The intent is to gain a better understanding of their familiarity with epilepsy, its characteristics and the prevalence of seizure disorders in long-term care.

Managers at homes owned by Peterborough-based OMNI Health Care and the Sarnia-based Steeves & Rozema Group will soon be asked to complete a 10-minute electronic questionnaire about the prevalence of epilepsy in long-term care homes. The information provided will help Epilepsy Ontario and community epilepsy agencies better understand the needs of residents and staff members, and assist homes in finding needed resources.

The survey, which was created by Epilepsy Ontario and Bramm Research, is being conducted as part of an Ontario Trillium Foundation-funded project called From Isolation to Inclusion, which aims to enhance the capacity of community epilepsy agencies across the province to ensure people with seizure disorders have adequate access to resources and information.

Nikki Porter, Epilepsy Ontario’s project manager for the From Isolation to Inclusion initiative, emphasizes that the survey aims to discover opportunities to enhance resident care.

“Our goal in this survey is to achieve an accurate understanding of current levels of awareness and understanding,” she says. “This information will help Epilepsy Ontario and community epilepsy agencies across the province help support long-term care homes, schools and workplaces to accommodate people with epilepsy.”

About five per cent of residents in Steeves & Rozema’s seven long-term care homes have been diagnosed with a seizure disorder, says Jane Zoeger, the company’s vice-president of long-term care.

Zoeger says a key reason for Steeves & Rozema’s participation in the Epilepsy Ontario survey is because the organization understands the impact seizure disorders have on people’s lives and wants to improve quality care wherever possible.

She adds that the company welcomes opportunities to engage long-term care home staff members in epilepsy education to enhance care quality.

“Epilepsy is a diagnosis in long-term care for some of our residents and we are looking to enhance our care and knowledge in this area,” Zoeger says. “Our senior population is getting more complex over time and epilepsy is part of this complexity in long-term care.”

OMNI president and CEO Patrick McCarthy says his organization agreed to participate in this initiative because seizure disorders affect some residents in OMNI’s 18 long-term care homes.

McCarthy says OMNI is also dedicated to creating partnerships with other community organizations, adding he sees the collaboration with Epilepsy Ontario as an opportunity to make a difference.

“Many of our homes have residents diagnosed with seizure disorders, including epilepsy, and I believe that by working together we can help to identify areas where OMNI homes might be able to benefit from education and support services provided by Epilepsy Ontario,” McCarthy says.

“In turn, (this will) help Epilepsy Ontario develop knowledge of prevalence of seizure disorders in long-term care and of the particular support needs of residents living in long-term care homes.”

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.ca. You can also leave a comment below.

Epilepsy Ontario launches exciting crowdsourcing initiative

August 7, 2014

Epilepsy Ontario has launched a crowdsourcing initiative to raise money in support of epilepsy awareness, and those who donate will have their name seen by millions of people.

Through the crowdsourcing site Giveffect, the organization is aiming to raise $5,000 during the 13th annual Targa Newfoundland, a five-day, 2,200-kilometre road rally held Sept. 14-19 across paved roads in the eastern and central regions of Newfoundland.

For a $25 pledge, people will get their name placed on the Drive for Epilepsy Awareness rally car, a modified 1999 Honda Civic with a unique Acura engine, which will be driven by Epilepsy Ottawa president Peter Andrews, an experienced racer. The car is painted purple, the internationally recognized colour for epilepsy awareness.

All donations will go to Epilepsy Ontario.

Andrews and a friend came up with the idea to enter the race in support of Epilepsy Ottawa and extended the opportunity to Epilepsy Ontario. Andrews, whose daughter is living with epilepsy, says the event is an opportunity to combine two of his passions — racing and raising epilepsy awareness.

Andrews brought his idea to Epilepsy Ontario executive director Rozalyn Werner-Arcé who was encouraged by the opportunity a race car driving for epilepsy awareness presents. Targa Newfoundland is expected to attract approximately 100,000 live spectators as well as 240 million television viewers worldwide. More than 250,000 people are expected to read about the event via social-media sites and through online coverage.

“The idea of using crowdsourcing really creates something that multiple stakeholders can get behind,” Andrews says. “Roz and I both thought that this event has the kind of cachet that might get the interest of a lot of people and get them involved.”

People who donate to the Drive for Epilepsy Awareness will also receive regular updates via e-mail about Andrews’ progress in the race. Hopefully, Andrews says, people will then share the information with their friends and family as well as social-media platforms such as Twitter and Facebook, which will help raise awareness.

The Drive for Epilepsy Awareness is Epilepsy Ontario’s first crowdsourcing initiative. Werner-Arcé says the maiden venture into crowdfunding represents an exciting opportunity for the organization.

“This is a great chance to raise awareness about epilepsy and engage a new group of people,” she says.

Click here to donate to Epilepsy Ontario.

Click here to support Epilepsy Ottawa.

Writer: Deron Hamel

Epilepsy changed student’s life but didn’t take it over

July 31, 2014

It was the summer of 2012 and Elizabeth Paley was at a camp with two friends. She was expecting to have a fun time, but things changed.

“Little did any of us know,” she says, “that this enjoyable weekend would turn surreal in a matter of minutes.”

The first morning she was at camp Elizabeth collapsed and hit her head on a table. When she woke up she was surrounded by paramedics and a crowd of onlookers.

The teenager had suffered a seizure.

Rather than spending the weekend with her friends, Elizabeth found herself moving from hospital to hospital for procedures including a CT scan and an electroencephalography (EEG), which measures electrical activity in the brain. Doctors diagnosed her as having a seizure disorder and put her on medication. Elizabeth was later diagnosed as having primary generalized epilepsy.

“For a great deal of time following my diagnosis, I thought that having epilepsy was the worst thing to have happened to me,” she recalls. “I was a teenager who had to start taking medication daily (and) wear a medical alert bracelet broadcasting my condition.”

Most frustrating for her was at the time Elizabeth knew she would not be able to join her classmates at Burlington’s Assumption Catholic Secondary School on a much-anticipated school trip to the Dominican Republic in the upcoming school year.

But, despite the negative consequences, Elizabeth says there were good things that followed her diagnosis — the most important being that epilepsy has shaped her perception of others and has helped guide her on the path to an enriching career.

Now 18, Elizabeth will be enrolling in Humber College’s child and youth worker program in September. She explains the role her diagnosis played a role in her career choice.

“While I have known for a long time that I want to help people in my future, my diagnosis with epilepsy certainly confirmed this,” she says. “I feel that helping children while they are still young is the key to solving some of their problems in the future.”

To help fund her studies, Elizabeth has been awarded an OBCL scholarship. She is one of six Ontario students to receive the scholarship this year.

Aside from Elizabeth’s scholastic achievements — she has maintained a spot on the honour roll throughout high school — the recent Grade 12 graduate is active in volunteering. Having started volunteering with her grandmother at the Good Shepherd Centre when she was 15, it’s an important part of Elizabeth’s life she plans to continue once she moves to Toronto for school. She says she would like to pursue volunteering opportunities related to epilepsy.

“After I discovered Epilepsy Ontario as well as this scholarship, I became aware of the many volunteer opportunities present in Toronto regarding epilepsy,” she says. “While my life with epilepsy may only be beginning, I am no longer ashamed of my condition’s name.”

OBCL has been supporting students with epilepsy through the scholarship awards since 2006. Every year, up to 10 Ontario students win a $1,000 scholarship for post-secondary education. As part of their application package, students must submit a personal essay under that year’s theme.

Writer: Deron Hamel