Tag Archives: Epilepsy

WHO passing epilepsy-care resolution a ‘huge’ step towards closing treatment gap

September 10, 2015

By Deron Hamel

A World Health Organization (WHO) resolution that was unanimously passed earlier this year could create large-scale, positive change in epilepsy treatment across the globe, says Mary Secco, an Ontario advocate for people with epilepsy.

IBE and WHO representatives, pictured left to right: Athanasios Covanis, president IBE; Shekhar Saxena, WHO; Shichuo Li (China); Brooke Short, WHO; Ann Little, executive director IBE (Ireland); Mary Secco, IBE (Canada); Tarun Dua, WHO; Emilio Perucca, president ILAE; Alla Guekht, ILAE (Russia). Photo credit: International Bureau for Epilepsy

Secco, who is co-chair of the International League Against Epilepsy’s (ILAE’s) Global Outreach Task Force as well as a volunteer with a worldwide organization called the International Bureau for Epilepsy (IBE), says with the WHO committing to further epilepsy care and research, the large epilepsy treatment gap in developing countries could be significantly narrowed.

Delegates at the WHO’s general assembly in Geneva, Switzerland, unanimously approved a resolution in May to improve epilepsy care and research around the world.

As an IBE volunteer, Secco met with the Public Health Agency of Canada and Foreign Affairs Canada to encourage support for the resolution. She also addressed delegates from the World Health Assembly’s 194 member states to underscore the importance of the resolution passing.

In her presentations, Secco noted that an estimated 50 million people worldwide are living with epilepsy and that there is a large treatment gap in the condition.

For instance, 75 per cent of people living with epilepsy have never received medication for treatment, despite the fact that epilepsy is treatable and it would cost as little as US$5 per year for medication for some people.

“To me, (the treatment gap) is a huge social injustice,” Secco tells Voices of Epilepsy. “We have strategies for malaria, for polio, we’re putting so much money towards other things, and we have never looked at epilepsy and we could make such a difference by just having it on governments’ radar.”

Momentum supporting the WHO to commit to a focus on epilepsy treatment has been building in the past year. In December, China requested that epilepsy be put on the WHO’s agenda. In February, seven countries formally sponsored the resolution: China, Russia, Maldives, Argentina, Iran, Japan and Panama.

During the May general assembly, 43 nations spoke to support the resolution, with 19 countries – including Canada – co-sponsoring it.

With the passing of the resolution, the WHO is now accountable for ensuring steps are taken to close the treatment gap. At the World Health Assembly in 2018, the WHO will have to demonstrate steps the organization has taken to improve epilepsy care worldwide.

“We’ll see governments putting epilepsy medications in stock; we’ll see countries putting epilepsy training within their health-care system and having a plan to treat people with the condition in their countries,” says Secco, who is travelling to Istanbul, Turkey, this month to attend a conference where she will be training delegates on how they can use the WHO resolution as leverage to improve epilepsy care.

“There are measurable outcomes that the WHO has to bring back to us in 2018. … This is huge for people with epilepsy. It gives us the political will now to work with our governments to see this go into action.”

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Webinar focuses on coping strategies for epilepsy-related memory challenges

May 16, 2014

An upcoming Epilepsy Ontario-hosted webinar will focus on developing strategies for improving memory function for people who have a seizure disorder.

The webinar, called Epilepsy and Memory: Coping Strategies, will feature guest speaker Dr. Brent Hayman-Abello, a clinical neuropsychologist at London Health Sciences Centre. The May 22 webinar is the third instalment in Epilepsy Ontario’s Knowledge is Power series.

Hayman-Abello says the webinar will be “very beneficial” to people who are affected by epilepsy and other seizure disorders and experiencing memory issues. He’ll largely centre on specific strategies and techniques to help improve everyday memory functioning and ways to work around memory difficulties.

The webinar also welcomes friends and family members of people living with a seizure disorder so they can help people experiencing memory problems work through them, Hayman-Abello adds.

“I think the webinar will help people understand that they don’t have to put up with having memory difficulties and that there might be some pretty simple ways to work around memory difficulties that people are having,” he tells Voices of Epilepsy.

“(The webinar) will be very beneficial to people who are affected by epilepsy; whether they are people that have epilepsy or friends and family members of people who have epilepsy, so that they can understand the issues and maybe help share the information.”

Hayman-Abello will also speak about the definitions and descriptions of memory, as well as factors that can affect memory for people with epilepsy.

Hayman-Abello notes that not everyone with a seizure disorder has memory challenges stemming from their condition. That said, memory difficulty is a common issue for people with epilepsy, he says.

“People might be surprised that there are different kinds of memory problems, that they can come from a lot of different areas, and some are easier to work around than others,” Hayman-Abello says. “If people are having memory problems, sometimes the memory can’t be fixed, but you can work around it.”

The Epilepsy and Memory: Coping Strategies webinar is being held Thursday, May 22 from 7 p.m. to 8 p.m.

To register, e-mail gula(at)epilepsyontario.org. To join the webinar by telephone, call 416-764-8662/1-888-884-4534 and enter participant code 7605062#. To join via Internet, login at http://ontariobraininstitute.adobeconnect.com/epilepsy-memory/ and click on the “Enter a Guest” icon.

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.

Can exercise reduce seizures in children with epilepsy? Study aims to find out

May 1, 2014

When most people talk about physical activity, they think of cardiovascular health. However, a body of evidence suggests exercise can also be an important factor in reducing seizures in children with epilepsy. This is the focus of an EpLink study led by Dr. Gabriel Ronen.

Ronen, a researcher from McMaster University, is conducting a study on the benefits of exercise for children living with epilepsy. The study is monitoring a group of children with epilepsy who are involved in a walking program and comparing their seizure numbers to children with epilepsy who are not participating in regular exercise.

The researchers’ hypothesis is that children with epilepsy who get regular exercise will have fewer seizures.

Existing studies indicate that people who exercise regularly show enhanced scores on perception when their cognition is tested, with improvements in concentration, verbal abilities, reading skills and arithmetic.

Studies also show increased exercise is particularly beneficial to children in primary and middle school. Research also indicates that increased exercise can decrease the impact of conditions such as depression and anxiety, both of which are known to contribute to seizures in some people with epilepsy.

As part of the ongoing study, about 70 children and youths aged eight to 15 are participating in a walking program hosted at McMaster Children’s Hospital and Children’s Hospital of Eastern Ontario. Participants walk with pedometers to measure the distance walked on an ongoing basis for six months, with seizures charted. For the next six months the children are monitored to see if there are sustained benefits.

Ronen and his team are trying to determine if exercise in children can change genetic functioning in the brain through a phenomenon called epigenetics. Through epigenetics, gene expressions can be manipulated, changing their function.

“It seems that exercise may up-regulate certain gene expressions that improve certain brain factors,” Ronen tells Voices of Epilepsy. “We believe that exercise may have an epigenetic effect that certain positive brain substances increase and some of the deleterious effects on the brain decrease.”

There are existing studies suggesting increased physical activity in adults may improve medical and psychosocial aspects, but there are no such studies in children, Ronen says.

This is the gap he and his team are filling through their work.

Established by the Ontario Brain Institute (OBI), the EpLink program is unique in Canada. EpLink involves more than 25 researchers working at nine different university and hospital sites across Ontario. EpLink also encompasses five industry partners and five nonprofit advocacy groups.

On March 5, 2013, the province committed to injecting $100 million over five years to OBI, which, in turn, means the program will be funded until 2018.

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.

Agencies buzzing with activity to honour Purple Day

March 25, 2014

Epilepsy support agencies across Ontario are gearing up for Purple Day, the annual international event aimed at raising epilepsy awareness.

Recognized every March 26, Purple Day was launched in 2008 by Cassidy Megan, a nine-year-old Nova Scotia girl who is living with epilepsy.

Since then, individuals and organizations worldwide have hosted events and campaigns to raise awareness of the neurological condition that affects more than 65 million people across the globe, including an estimated 300,000 Canadians.

The weeks leading up to Purple Day have been busy at Epilepsy Halton Peel Hamilton. On March 14, the agency was the featured charity at tenor Colm Wilkinson’s performance at Mississauga Living Arts Centre. Wilkinson addressed the audience of about 700 people to talk about March being epilepsy awareness month and informed the crowd of the programs the agency offers.

On March 28 the agency is hosting its annual Purple Gala. The fundraising event will be held at Credit Valley Golf and Country Club in Mississauga.

Among the many other initiatives Epilepsy Halton Peel Hamilton is working on in honour of Purple Day is a campaign to raise awareness of seizure disorders at schools. The agency has developed kits that include tattoos, pencils, bracelets and information packages to educate young people about epilepsy.

“The end goal is to connect with communities, raise awareness and build on upon that,” says Cynthia Milburn, the agency’s executive director.

Epilepsy and Seizure Disorder Resource Centre of South Eastern Ontario hosted its second annual Purple Pancake Breakfast in Kingston and Gananoque on March 22. All money raised from selling blueberry pancakes is going toward helping the agency fund its community education programs.

Like Epilepsy Halton Peel Hamilton, the resource centre is reaching out to school children. The organization will be attending school assemblies on Purple Day to provide information to students and teachers.

“I think the younger we can get people talking about epilepsy the better,” says executive director Susan Harrison. “Kids are very open to learning more and understanding. I don’t think I’ve been to a school yet where there wasn’t a student who had epilepsy, so they’re seeing it, but they’re not understanding it.”

Nikki Porter, the communications liaison at Epilepsy Support Centre’s Windsor/Essex branch, notes how 10 Tim Hortons stores in Windsor are going to be selling doughnuts with purple sprinkles on March 26. The doughnut shops have also hung Purple Day posters at their locations. The 10 stores are owned by one company which was approached with the idea by a Windsor/Essex branch member last year.

The agency, which covers a large catchment area across southwestern Ontario, is getting support from many others across the region. In Chatham-Kent, the Purple Pansy flower boutique is selling bunches of purple tulips and donating proceeds to the Epilepsy Support Centre.

In Elgin, the statue of Jumbo the elephant will be adorned with a 60-foot purple scarf on March 26.

Additionally, official Purple Day proclamations have been made by city councils in Windsor and Amherstburg.

Porter explains the difference she would like to see made from these campaigns.

“I would like to see (this awareness lead to) more acceptance of people with epilepsy in our communities,” she says.

Click here to learn more about Purple Day.

Writer: Deron Hamel