Author Archives: eCreative Studios

Seizure response dogs ensuring safety, providing companionship

February 27, 2014

While guide dogs assisting people with visual impairment have been around hundreds of years, it’s only been in the past three decades that people with epilepsy have discovered the difference specially trained canines can make in their lives.

Lions Foundation of Canada Dog Guides has trained more than 70 dogs to assist Canadians living with a seizure disorder. Identified by their jackets, these animals accompany people with severe seizure disorders at home and in public to ensure their safety.

Based in Oakville, Lions Foundation of Canada Dog Guides trains about 10 to 15 seizure response dogs each year.

Seizure response dogs receive extensive training. If a person goes into seizure at home, the dogs are trained to press Lifeline buttons and even speed-dial buttons on cordless and mobile phones to alert emergency response teams of the situation. In public, the dogs will bark to attract attention, should their owner go into seizure.

They are also trained to comfort people who have just had a seizure, snuggling against their owner to ease their anxiety.

Ian Ashworth, director of program development at Lions Foundation of Canada Dog Guides, notes that if a person goes into seizure in public, passersby are often frightened and don’t know what to do. Seizure response dogs bridge a communication gap between their owner and the public, Ashworth says.

“If you’ve got a dog there that’s barking for attention and it has a vest on that says ‘Seizure Response Dog,’ then immediately people feel a lot more comfortable approaching the situation and getting involved,” he says.

“The dog barking brings attention and help much, much faster. A lot of clients we have had have said how much the dog has helped them in that regard. Whereas previously they may have been waiting a long time and maybe even injured themselves, now with their dog attention comes a lot faster.”

Seizure response dogs bring other benefits to their owners, such as companionship, Ashworth says.

The process for getting a seizure response dog starts with submitting an application outlining the severity of a person’s seizure condition, an authorized epilepsy diagnosis and references. Once Lions Foundation of Canada Guide Dogs has the application, an in-home assessment with a dog trainer is arranged to determine if the person would benefit from a seizure response dog.

Seizure response dogs are provided for free to those requiring them.

Click here for more information about Lions Foundation of Canada Dog Guides.

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.

Celebrate Purple Day 2014 – Show the world your support!

February 21, 2014

Epilepsy does not discriminate! No one is immune.

In Ontario 65, 000 people are living with Epilepsy and every year over 6,000 people learn they have the disorder.

Help us to reach out to EVERYONE in Ontario this Purple Day by showing your support for Epilepsy!

Wednesday March 26th, 2014 is Purple Day!

Events are planned around the world to share knowledge about the disorder, build a common voice for Epilepsy and change attitudes!

No activity is too little to build awareness and to show your support! For a list of activities and how to become a PURPLE DAY AMBASSADOR click here!

Share your stories, pictures and ideas at #PURPLEDAY2014

Clobazam still available but shortage is a concern

February 18, 2014

Click here for an update (May 28th, 2014)

Epilepsy Ontario has learned of a potential clobazam shortage. While there is a supply of clobazam in the market across Ontario and Canada, some pharmacies are reporting shortages of the medication.

Epilepsy information specialist Suzanne Nurse advises people taking clobazam to contact their pharmacies to ensure they can fill their prescriptions ahead of time.

“It’s important to stress that there appears to be a supply in the system at the moment, (but) it’s good to be aware that you shouldn’t wait (until your prescription runs out) to get your prescription filled,” Nurse says.

Epilepsy Ontario reviewed the situation on Feb. 13, discovering that the shortage was more widespread than originally thought. The agency contacted epilepsy agencies and epilepsy specialists to alert them about the situation. The shortage is expected to last until March or April.

Nurse says people taking clobazam shouldn’t panic about the situation. If a pharmacy doesn’t have clobazam, pharmacists are willing to track down supplies from their distribution lines or from other pharmacies for people.

“And there are other supports,” Nurse says. “If people find that they can’t get their prescription refilled they can contact Epilepsy Ontario and we can provide information and if they run into a shortage they should contact their physician immediately.”

The Canadian Epilepsy Alliance has also sent a letter to Canada’s Health Minister Rona Ambrose requesting urgent action to prevent the shortage from escalating.

Six companies market clobazam in Canada. Four of the generic manufacturers are experiencing back-orders. As of Feb. 14, only one of the four manufacturers had posted a notice on the Canadian Drug Shortage Database.

This isn’t the first time there has been concern over clobazam shortages. In January 2013, Epilepsy Ontario sent out an alert about a clobazam shortage. The clobazam supply began to recover the following month.

If your pharmacist is unable to fill your prescription, Epilepsy Ontario recommends you contact your health-care provider immediately. Do not make any changes to your treatment — for example, skipping doses, reducing the dose, or discontinuing the drug — without consulting your doctor.

For more information, please contact Epilepsy Ontario at 905-474-9696, or toll-free 1-800-463-1119, send an email to info(at)epilepsyontario.org or see our drug shortages information sheet.

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.

Update on the clobazam supply

Clobazam is currently available in Canada, but shortages of some clobazam products continue.

During March and most of April there were significant shortages of clobazam, and manufacturers were out-of-stock. The Canadian Epilepsy Alliance (CEA) was first alerted to shortages of clobazam in January 2014 by people who couldn’t get their prescriptions refilled. In early February the CEA and Epilepsy Ontario became aware that multiple generic manufacturers were unable to supply clobazam, although the reason for these shortages has not been disclosed. The supply of brand name clobazam (Frisium) became depleted, due to increased demand, as the generic clobazam stocks dwindled. Two of the generic clobazam manufacturers have medication available again, beginning with APO-clobazam (Apotex) in late April and PMS-clobazam (Pharmascience) during the week of May 28th.

Status of clobazam drugs – May 28, 2014
APO-clobazam (Apotex)	Status: Available
Clobazam-10 (Pro-Doc Limitée)	Status: On Backorder (no resupply date available)
DOM-clobazam (Dominion Pharmacal)	Status: Discontinued
Frisium (Lundbeck)	Status: On Backorder (estimated resupply date is June 30, 2014)
PMS-clobazam (Pharmascience)	Status: Available
Teva-clobazam (Teva)	Status: On Backorder (estimated resupply date is June 4, 2014)

If you experience any difficulties due to the clobazam shortage, or a shortage of another epilepsy medication, please contact Epilepsy Ontario for assistance. We would also be interested in hearing your story if you have encountered a shortage of your medication.

Epilepsy Ontario and the Canadian Epilepsy Alliance Drug Shortages Committee have been actively involved in bringing attention to this particular shortage, and epilepsy drug shortages in general, by communicating with the Federal Minister of Health, Health Canada, provincial Ministries of Health, physicians, pharmacists, drug manufacturers, and other stakeholders. People with epilepsy rely on consistent access to their anti-seizure medication. Drug shortages put people with epilepsy at risk, and the consequences can be serious.

Public Consultation on Drug Shortages: If you are concerned about drug shortages you can share your opinion and your comments. A public consultation on drug shortages is being held by Health Canada from May 22 to July 5, 2014. Click here for more information.

Researchers sequencing genomes to uncover causes of epilepsies

February 10, 2014

A team of Canadian researchers has embarked on a four-year study of the genetic contributions to epilepsy to develop personalized approaches to diagnosing various types of seizure disorders early as well as discovering treatments for drug-resistant epilepsy.

Researchers involved with the Canadian Epilepsy Network (CENet) are sequencing genomes from 2,000 patients. CENet researchers are collaborating with U.S. scientists who are sequencing 4,000 patients’ genomes as part of the Epi4K project, and Europe’s EpiPGX initiative, which is sequencing 2,000 patients’ genomes.

Encoded in the DNA of every organism, genomes contain the entire heredity of a person’s genetic history. By using a process called next-generation sequencing, researchers will be able to examine genetic changes that predispose people to epilepsy and even predict a person’s response to anti-seizure medication.

“Looking forward, this study will (examine) how these genomic technologies will save money to the system and improve the care of patients,” Dr. Berge Minassian, one of CENet’s leaders, tells Voices of Epilepsy.

“At the end of the whole project, we are hoping to come up with a test . . . where anybody with epilepsy will have their genome sequenced and we will be able to predict what type of epilepsy they have; whether they have easy-to-treat epilepsy or hard-to-treat epilepsy.”

At the end of the project, as many as 10,000 epilepsy patients could have their genomes sequenced, which Minassian says would be a major step forward in epilepsy research.

“That’s a huge amount of information — it’s massive,” he says. “We will know everything we need to know about the genetic contributions to epilepsy. When it’s all said and done, it will have a major impact on epilepsy.”

Minassian underscores the importance of knowing a disease’s cause. Once the cause is understood, he says, researchers can start to learn about the mechanisms of the disease and why it occurs.

“(Knowing the cause of epilepsies) opens lots of entryways to treatment, because now you understand why one person’s brain is making seizures and another person’s brain is not,” he says.

“Finding the cause of a disease is like finding the Holy Grail.”

The other CENet research leaders are Dr. Patrick Cossette of the University of Montreal Hospital Research Centre and Dr. Jacques Michaud of Montreal’s Sainte-Justine University Hospital Research Centre.

Genome Canada and Génome Québec are the primary funders of the $10.8 million research project. UCB Canada Inc. recently contributed $200,000 to the research.