Impact of Epilepsy on Canadians Survey Results Released!

February 29th, 2012 · No Comments

The following is reported on the English-language version of the Canadian Epilepsy Alliance’s web site:

SERIOUS CHALLENGES FACED BY CANADIANS WITH EPILEPSY REVEALED
During the fall of 2011, many of our members participated in a survey entitled The Impact of Epilepsy on Canadians. Conducted by Leger Marketing and completed by 671 respondents across Canada in both official languages, the survey is the first of its kind in Canada to explore the impact on life and health among adults living with the disorder.

The findings reveal that Canadian adults living with epilepsy are still struggling to control the common seizure disorder, and face serious health obstacles, including access to specialized care and treatment options, as well as numerous social impacts. Canadians living with epilepsy list the following top challenges that need to be addressed:

  • Stigma and discrimination
  • Lack of independence
  • Social and work barriers

The Canadian Epilepsy Alliance urges all Canadians to take a stand in support of those living with epilepsy by:

  • Eliminating the stigma facing those living with epilepsy by supporting greater public education and awareness about the disorder
  • Ensuring access to all safe and effective options for optimal seizure control – right across Canada
  • Expecting and demanding the best possible specialized care, treatment and social supports for Canadians living with epilepsy”
You may recall that we here at SECA reported on and linked to providing input for this survey some months ago. This is excellent information to have and we at SECA urge everyone to go to the CEA’s website and read the report! Thanks to all involved for making this report on the impact of epilepsy possbile!
-Alex-

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European Written Declaration on Epilepsy is Approved

September 22nd, 2011 · No Comments

Directly from the website of the International League Against Epilepsy (ILAE):

“Declaration receives record number of MEP signatures

A Written Declaration on Epilepsy was passed in the European Parliament yesterday, 15th September 2011. Submitted by the European Advocates for Epilepsy Working Group in collaboration with Epilepsy Advocacy Europe – a joint task force of the International League Against Epilepsy and the International Bureau for Epilepsy, approval of the declaration marks a significant step in the efforts of both groups to increase the quality of life of people with epilepsy.

Written Declarations are a tool used by the European Parliament to launch a debate on a subject which comes within the European Union’s remit. In order to be passed, a declaration must be signed by a majority of Members of the European Parliament (in this case, 369 signatures). The declaration on epilepsy received 459 signatures, 90 more than the minimum required, the highest number received by any declaration in the current EU term. This is clear indication of the recognition of MEPs across Europe for the need for improvements in epilepsy healthcare.

Having received the required number of signatures to be passed in the European Parliament, the Written Declaration will be officially communicated from the Parliament to the Commission and to the Parliament of each EU Member State together with the list of signatories.

The declaration calls on the Commission and Council to:

encourage research and innovation in the area of prevention and early diagnosis and treatment of epilepsy;

prioritise epilepsy as a major disease that imposes a significant burden across Europe;

take initiatives to encourage Member States to ensure equal quality of life, including in education, employment, transport and public healthcare, for people with epilepsy, e.g. by stimulating the exchange of best practice;

encourage effective health impact assessments on all major EU and national policies;

First signatory to the declaration, Mr Gay Mitchell MEP stated: “Last February, we launched the first ever European Epilepsy Day. Seven months later, we successfully garnered the support of a large number of MEPs to pass this Declaration, which I have no doubt will raise awareness for epilepsy in Europe and improve prevention, care and quality of life of people with epilepsy. This Declaration is a step in the right direction for people with epilepsy, as well as their close family members.”

Epilepsy Advocacy Europe, in thanking the members of the European Advocates for Epilepsy MEPs Working Group and the national epilepsy organisations across Europe, who worked tireless over the last months to ensure the success of the declaration, believe that it is an important first step to address the current situation in Europe where there are 6 million people living with epilepsy, with 300,000 cases diagnosed each year. In Europe up to 40% of people with epilepsy still do not receive appropriate treatment and care yet, with appropriate treatment, up to 70% of people with epilepsy could be seizure-free.”

Here is the link to the article: article.

Also, here is the link to the document that was passed: the passed document.

This is an exciting step forward for improving epilepsy care in Europe, and potentially the world! Congratulations to our European counterparts and the epilepsy community at large!

-Alex-

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Survey on Impact of Epilepsy

August 19th, 2011 · No Comments

IT’S YOUR CHANCE TO BE HEARD!
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Share your voice!

Canadian adults with epilepsy are invited to participate in a Canada-wide survey:

The Impact of Epilepsy on Canadians

Take a few minutes to fill in this questionnaire that explores how epilepsy impacts health and access to treatment and care.

We need to hear from you!

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