Author Archives: eCreative Studios

Latest SUDEP info available online

May 3, 2012

An e-toolkit containing the latest research-based material aimed at providing information about sudden unexpected death in epilepsy (SUDEP) to four main target groups is now available online.

The e-toolkit, which is available on SUDEP Aware’s website, contains key information pamphlets targeting health-care providers, people bereaved by SUDEP, teens and young adults, and people with epilepsy.

“Our goal is to work with willing collaborators to produce consistent, up to date, reliable information about an issue that is hard to talk about and one where people can become misinformed,” says SUDEP Aware co-founder and neurologist Dr. Elizabeth Donner.

Donner adds that although there is an abundance of information about SUDEP available online, much of the material is outdated. Epilepsy research is a field that’s rapidly evolving, so the organization wanted to produce the most up-to-date online content possible.

For example, the No. 1 SUDEP risk factor cited by experts today is a high number of tonic-clonic seizures, whereas even 10 years ago other factors were being listed.

Given the SUDEP risks associated with a high number of tonic-clonic seizures, people affected by epilepsy need to understand there are things they can do to reduce their risk.

“People with epilepsy should work with their health-care team to reduce the number of seizures they are having and that, we believe, will reduce their risk of SUDEP,” says Donner.

“The idea behind this e-toolkit is going to be (providing) really high-quality, reliable information.”

The added advantage to having this information available online is that it’s easy for SUDEP Aware to update data as needed, says Donner.

Donner says the best result that could stem from the e-toolkit, which will be continuously updated, is simple: awareness.

She adds a quote from the e-toolkit underscoring the value of awareness.

“Awareness is the first step towards finding the cause and prevention of SUDEP. People with epilepsy should be informed of all the risks of their conditions and how to lower those risks. Having this information allows them to make decisions that could possibly save their lives.”

SUDEP Aware was formed by Donner and Tamzin Jeffs, SUDEP Aware’s executive director. SUDEP Aware’s mission is to increase education, awareness and support.

Jeffs has personal reasons for co-founding SUDEP Aware; she was diagnosed with the neurological disorder several years ago and her youngest sister died as a result of epilepsy five years ago.

“I found myself unable to find the information and support I needed and felt should have been available to me.  To help address this, I joined forces with paediatric neurologist Dr. Elizabeth Donner to co-found SUDEP Aware,” says Jeffs.

Adding to the need for an online resource like SUDEP Aware is the fact that families often first learn about SUDEP after a loved one dies from it.

“This e-toolkit was developed to lower the likelihood of that happening to others (and) to help address the questions and concerns families may have about SUDEP and to (facilitate) the discussion of SUDEP between families and their health-care providers,” says Jeffs.

The e-brochures and e-toolkit are being made available as part of the SUDEP Aware’s Making Sense of SUDEP awareness campaign.

Anyone wishing to download any of the four new e-brochures can do so by clicking here.

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

Information specialist brings myriad of experience to the table

April 26, 2012

People affected by epilepsy who need answers to their questions can turn to Suzanne Nurse, who is an excellent information resource and who has a myriad of experience working with people who have epilepsy.

Nurse, Epilepsy Ontario’s new epilepsy information specialist, also holds a PhD in medicine with specialization in neuroscience. Through her new role, which began about two weeks ago, Nurse is helping a wide range of people find the information they need.

“With my new role I’m . . . providing information to people who have questions about epilepsy — that would be people who have a diagnosis of epilepsy themselves or who have a family member living with epilepsy — as well as partners in the community,” she says.

The information people seek can be anything from questions about accessing medication to dealing with discrimination to trying to learn more about their diagnosis.

Nurse says two goals she would like to achieve through her position are to raise the profile of Epilepsy Ontario as a key source of information for people in the province and to connect people with their local epilepsy agency.

Prior to coming to Epilepsy Ontario, Nurse was actively involved in epilepsy education and support while a staff member with the Epilepsy Support Centre, a grassroots community-based agency in London, Ont. between 2008 and 2012. She also served as executive director of the Canadian League Against Epilepsy and has been a member of the Canadian Epilepsy Alliance (CEA) Education Committee.

Nurse also has a strong background in neuroscience research, having worked on studies examining brain function. She has a PhD in medicine from Memorial University in Newfoundland and Labrador and post-doctorate studies in brain function at the University of Montreal and the University of Western Ontario.

Epilepsy Ontario executive director Rozalyn Werner-Arcé says Nurse’s expertise will greatly benefit Epilepsy Ontario.

“I’m very excited to have such a knowledgeable person on staff at Epilepsy Ontario,” she says of Nurse.

“The role of epilepsy information specialist is a positive step towards Epilepsy Ontario achieving its strategic goal of being an information resource to the epilepsy community.”

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

Groundbreaking epilepsy research project ‘unparalleled’ in clinical focus

April 19, 2012

OBI-funded project launches
Deron Hamel

The epilepsy research community is excited about the launch of an “unparalleled” project that will investigate improvements in clinical care for seizure disorders.

Epilepsy Ontario board member and director of the University of Toronto Epilepsy Research Program Dr. Mac Burnham says the most exciting aspect of the research project, which is funded by the Ontario Brain Institute (OBI), is the focus on achieving clinical results.

“It’s epilepsy research, but it’s not meant to be basic science; it’s research that’s meant to have a clinical impact within the next five years,” says Burnham, a scientist involved with the project.

“That’s a very important aspect of the OBI; they don’t want abstract research, they want practically oriented research.”

The research being undertaken is multifaceted and will be bringing together experts with interests in many areas of epilepsy, including diagnosis and epidemiology, drug and non-drug seizure control, surgical seizure control, the role of genetics in epilepsy, and diet, which is the area of the project involving Burnham.

The dietary research Burnham has already been involved with has investigated the impact omega-3 polyunsaturated acids have on raising seizure threshold. Studies undertaken with animals suggest the introduction of omega-3 acids do raise the threshold.

“We’re going from animal work to a clinical trial at this point to see if we can help control seizures, essentially just by taking fish-oil tablets,” Burnham says.

Burnham says the best result that could stem from the work would be for it to impact epilepsy research in coming years. He characterizes the project as a major step forward in epilepsy research.

Aside from this project, the OBI is funding studies investigating autism spectrum disorders and cerebral palsy.

The epilepsy research project is bringing together Ontario’s top researchers, clinicians and patient advocacy groups, which is maximizing resources aimed at helping people with seizure disorders, says Dr. Donald Stuss.

Stuss, OBI’s president and scientific director, underscores the importance of the collaboration.

“We believe that working together in an integrated fashion on a provincial stage creates a level of communication and knowledge sharing that fertilizes innovation and benefits everyone,” he says.

“The best possible result is that the lives of those living with epilepsy are noticeably improved — either through better access to care, faster diagnosis, more effective treatments, or a better quality of life.”

If you have any feedback on this story, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca.

Bottom lines should not trump people: Anne Currie

April 12, 2012

Mother of woman with seizure disorder highlights struggle for VNS procedure, hopes conversations stem from story
Deron Hamel

Anne Currie and her daughter Megan are hoping the Ontario government will take action to help end the struggle they are going through to obtain a new vagus nerve stimulator (VNS), an implant essential to helping control severe seizures Megan endures.

Megan is currently on a waiting list to have her VNS replaced, after the battery began to fail last month. A fully functioning VNS decreases the occurrence and severity of seizures by sending electrical stimulation to the brain. Without a fully functioning VNS Megan’s health and well-being are in jeopardy, her mother says.

Megan, 25, first had a VNS implant when she was 11. Anne says it was a struggle to get the procedure performed, but the difference the implant made to her quality of life was outstanding, she says.

“Almost immediately we noticed a decrease in the severity, frequency and length of Megan’s seizures,” Anne says.

“The first device lasted only three years but the revision was done without question because the doctors at the Hospital for Sick Children recognized the positive impact the stimulator had had on Megan’s life.”

After three years when Megan’s VNS needed replacement, the procedure was performed.

Arrangements were made between Toronto Western Hospital and the Hospital for Sick Children for Megan’s health to be scrutinized, with the expectation that the stimulator would be replaced as needed, says Anne.

“This was small comfort, as we were thrust into the adult world of health care,” she says.

Then, about a month ago, the number of Megan’s seizures began to increase. A medical checkup revealed this was due to the battery in Megan’s VNS failing after nine years.

Megan’s neurologist advised her and her family that he would speak to a neurosurgeon about the issue. Anne then received the news that due to funding cutbacks there would be no replacement VNS for Megan.

While Ontario Health Insurance covers the VNS procedure, there’s a five- to 10-year waiting list, due to tight hospital budgets. Further to this, there’s a challenge to have the province allocate a specific budget for the VNS technology.

This is where Anne wants to see a change. One way to help create this change is to start conversations on the issue of VNS procedure wait lists and funding. Epilepsy Ontario welcomes your comments or suggestions.

If you have any feedback on this story, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca.