Stigma, independence, social and work barriers among top challenges to
TORONTO, Feb. 27, 2012 /CNW/ - Results released today from The Impact of Epilepsy on Canadians survey reveal that Canadian adults struggling to control the common
seizure disorder face serious health obstacles, including access to
specialized care and treatment options, as well as numerous social
impacts. They list stigma, independence, and social and work barriers
among the top challenges that need to be addressed. Conducted by Leger
Marketing in late 2011, The Impact of Epilepsy on Canadians survey is the first of its kind in Canada to explore the impact on life
and health among adults living with the disorder.
"We are grateful to the many Canadians from St. John's to Victoria who
shared their experiences living with epilepsy through this important
survey," says Gail Dempsey, President of the Canadian Epilepsy Alliance
(CEA). "Their insights confirm that many are still struggling to live
well with epilepsy, and importantly, they point to where changes are
needed most across the country to improve lives."
Restricted independence and discrimination
Every day, many Canadians living with epilepsy experience social
isolation, work barriers and relationship issues, according to The Impact of Epilepsy on Canadians survey. Over half of respondents (56 per cent) say that restricted
independence due to epilepsy is their number one challenge. Stigma,
discrimination and a lack of awareness about epilepsy is cited by 38
per cent as the number two challenge, along with the impact of the
disorder on their social life. The third biggest challenge facing
Canadians with epilepsy is maintaining employment, with half saying
their job choices are restricted, and just under 40 per cent unable to
get a job if they disclose their condition.
"Since I was diagnosed with epilepsy more than 28 years ago, I have
learned to cope with the many challenges of this disorder, including
the effects of seizures and the feeling of isolation which comes as a
result of stigma and discrimination," says Terri Beaton, who lives in
Victoria, B.C. "This survey, as well as connecting with my local
epilepsy society, has given me a voice - a way to share my experiences
with epilepsy, in the hopes of overcoming the obstacles faced by all
those who are touched by it, including our family, friends and
Access to medical care, community services
Beginning at diagnosis and throughout their lives, The Impact of Epilepsy in Canada survey indicates that Canadians living with epilepsy need improved
access to specialized medical care. On average, respondents waited
nearly four years to be diagnosed with epilepsy, and almost one year to
be seen for the first time by an epilepsy specialist. About 60 per cent
of the respondents who were candidates for surgery waited up to five
years to undergo surgery for epilepsy. For ongoing treatment of
epilepsy, 40 per cent report seeing their General Practitioner or
family doctor regularly, and only 30 per cent have ever been to see an
epileptologist, a neurologist who specializes in epilepsy.
The survey findings also show that access to community-based government
support services and disability programs is lacking, according to some
respondents. Although social services exist for people with epilepsy,
two-in-ten Canadians living with epilepsy say they are not available in
their communities. And with just over three quarters (77 per cent) of
respondents believing that uncontrolled epilepsy should be classified
as a disability, 41 per cent report that government disability programs
are not available to them.
Frequency and treatment of seizures
The Impact of Epilepsy on Canadians survey confirms that the majority of Canadian adults living with
epilepsy continue to endure seizures which have profound physical,
psychological and emotional consequences. Nearly all (96 per cent) of
those who responded to a question about seizure frequency indicated
that they suffer from seizures, with only four per cent reporting being
The survey also underscores that access to new and better treatment
options is needed to minimize the impact of epilepsy on all Canadians
touched by the disorder. Most respondents (82 per cent) say they rely
on medications to manage seizures, and that they have been prescribed
an average of four different drugs since they were diagnosed.
Taking a stand for epilepsy
"In light of these survey results, it is time for Canadians to take a
stand in support of people living with epilepsy," urges Dempsey.
"Together, we must strive to eliminate stigma through greater public
education, expect and demand the best specialized care and social
supports, and ensure better access to all safe and effective treatment
options for optimal seizure control," concludes Dempsey.
The Impact of Epilepsy on Canadians survey, conducted by Leger Marketing, was funded by UCB Canada Inc.,
and completed by 671 Canadians adults living with epilepsy in both
official languages, online or on paper, between August 9 and October
14, 2011. A probability sample of the same size would yield a margin of
error of +/-3.8 per cent, 19 times out of 20.
Please visit www.epilepsymatters.com for more information and to locate your community epilepsy support
About Epilepsy in Canada
Epilepsy is a chronic neurological disorder that affects approximately
300,000 people in Canada., Epilepsy is characterized by a tendency to
have recurrent seizures caused by abnormal, excessive electrical
discharges of the nerve cells, or neurons, in the brain. Living with
the condition can have severe impacts on a person's independence,
productivity and overall quality of life. It can also cause
significant challenges including difficulty finding employment, loss of
driving privileges in some provinces, cognitive decline, memory
impairment and higher mortality rates. People living with epilepsy also
face significant social stigma associated with seizures.
About the Canadian Epilepsy Alliance
The Canadian Epilepsy Alliance (CEA) is a Canada-wide network of
grassroots organizations dedicated to the promotion of independence and
quality of life for people with epilepsy and their families, through
support services, information, advocacy and public awareness. The CEA
network includes rural, urban, local and provincial incorporated
Epilepsy Associations from coast to coast in Canada and currently has
member associations in Newfoundland and Labrador, Nova Scotia, Quebec,
Ontario, Saskatchewan, Alberta and British Columbia. Visit www.epilepsymatters.com for more information.
About UCB Canada Inc.
UCB Canada Inc. was officially incorporated in 2006 with the objective
of bringing new-generation therapies to the Canadian market for
auto-immune and central nervous system diseases. As a patient-focused
organization, the company is dedicated to bringing new and innovative
programs to patients, and to the specialists who treat them, to help
improve the lives of people living with severe diseases.
SOURCE UCB Canada Inc.
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