December 23 / 2019
LivaNova SENTIVA VNS Therapy device, model 1000.
RE: a Safety Notice for the LivaNova SENTIVA VNS Therapy device, model 1000.
This message has created a lot of concern within the Canadian epilepsy medical community. We understand the concern regarding this notification from the American Epilepsy Society on the subject of the SENTIVA VNS Therapy devices.
This issue first came to light in August 2019 in the USA. A select number of devices were identified as potentially at risk. All unimplanted devices were removed from circulation, and American centres were alerted to this information.
This safety notification occurred prior to the Health Canada approval of SENTIVA. As such, all products available to Canadian patients are NOT affected by this notification. This safety notice does not apply to those patients implanted in Canada.
August 2018
Epilepsy Agencies and communities in Canada, the United States and elsewhere demonstrated dissatisfaction with the portrayal of seizures in Netflix Original “The After Party”. Concern was voiced in regards to the fact that the movie does not demonstrate proper seizure first aid and portrayed seizures as something to be joked about. Canadian Epilepsy Alliance President Deirdre Floyd’s statement on the matter appears below:
August 29, 2018
Reed Hastings
CEO, Netflix
Netflix, Inc.
100 Winchester Circle
Los Gatos, CA 95032, USA
Dear Mr. Hastings,
My name is Deirdre Floyd and I am President of the Canadian Epilepsy Alliance. We recently did a press release in relation to the Netflix Movie called “The After Party” in which the portrayal of a seizure was inaccurate and rather offensive. To quote a post from an individual that has epilepsy on our social media forum “Is this what they think of us? “
Individuals that have epilepsy often suffer from low self -esteem because they have been mocked in school, work place as well as in social settings. Quite often the attitude of others around them causes more harm than the actual seizure. If you are wondering why I am fairly knowledgeable about this it is because I’ve lived with epilepsy for approximately 42 years.
Epilepsy can affect anyone at any age. There are approximately 1 in 100 people who live with epilepsy and over 50 million people world-wide. People find it hard to get jobs and do not want to disclose they have seizure disorders for fear of how others will respond to them. It is the reason why the Canadian Epilepsy Alliance works hard in communities across Canada to help those living with epilepsy realize that it’s okay to disclose because living with epilepsy is no different than any other medical disease.
When a movie like this is released it sets back the work the Canadian Epilepsy Alliance does to educate the public. It is the mission of the Canadian Epilepsy Alliance to work to educate the public about the different types of seizures, appropriate first aid and to inform people that not all seizures look the same.
I don’t believe you realize the damage this has caused to those living with epilepsy that try to lead as normal a life as possible every day. I have listed some basic information about epilepsy for you to have on hand so that your employees as well as the screen writers for this movie can review to learn the real facts about epilepsy.
Epilepsy is a neurological condition of the brain characterized by the tendency to have recurring seizures. There are over forty different types of seizures and the triggers for seizures are very individualized. In Canada there are over 260, 000 Canadians living with epilepsy. Not all seizures are the same. The onset of epilepsy can begin at any age. To learn more about seizures visit www.canadianepilepsyalliance.org
Sincerely ,
Deirdre Floyd, President Canadian Epilepsy Alliance
June 2018
Disney released a warning regarding the animated film “The Incredibles 2”. The film contains scenes that may cause concern for those living with photosensitive epilepsy and other photosensitivities. For a statement from Canadian Epilepsy Alliance president Deirdre Floyd visit:
https://bit.ly/2L1tqNW
Visit our page on Photosensitive Epilepsy for more information: http://epilepsynl.com/photosensitive-epilepsy/
May 2018
Taylor Swift arranged to invite a young fan backstage for a personal meet and greet after the fan had a seizure that caused her to miss most of the concert.
In this video the fan speaks about what the meet and greet meant to her:
https://bit.ly/2L4ilIl
Ken Jeong jumps off stage mid-performance to help woman having a seizure: https://bit.ly/2LMgGY7
Epilepsy Newfoundland and Labrador presents a $25,000 research grant to MUN’s Faculty of Medicine: bit.ly/2JRiamI
(R-L) ENL Information Officer Sarah Mercer, ENL Executive Director Gail Dempsey, ENL Vice President Patti Bryant, ENL President Ron Stone, Researcher Dr. Gary Paterno, Researcher Dr. Matthew Parsons.
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April 2018
Prime Minister Trudeau commends everyone involved with Canadian Epilepsy Alliance for their hard work and dedication. “You can take pride in the knowledge that your efforts are enhancing the quality of life of your fellow citizens”
Click on one of the images below to read the full statement:
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Press Release from Canadian Epilepsy Alliance – June 2017