epilepsy in canada: an overview of stats, impact and resources
11 minute read
what triggers a seizure depends on the individual, according to epilepsy ontario, but possible commonalities include common events such as stress or a lack of sleep.
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what is epilepsy?
epilepsy is a neurological disease that produces abnormal bursts of electrical signaling in the brain. if it’s uncontrolled, these bursts result in seizures that can vary in form, frequency and duration. the uncertainty of seizures causes health and social consequences that can have a profound impact on livelihood and quality of life. while anti-seizure medication can help control these events, about a third of patients are resistant to drugs and struggle to cope.
think of the brain as a house, says dr. esther bui, a neurologist and clinician educator with the krembil brain institute at university health network in toronto. “my best analogy of what we do is view me as an electrician. so if you’ve got a plumbing problem, you call the plumber. there are stroke doctors who unclog the pipes in our brain. electricity is fascinating because unlike many other diseases, you actually gain function like a superhero. so if you can imagine electricity, when all the lights turn on in the house, the whole brain gets illuminated. in epilepsy, it’s an electrical problem.”
bui says that seizures from this electrical activity can mean any number of symptoms, like colourful circles or “a kaleidoscope of colours coming in from the right side. it could go on for 15 minutes. you could perfectly describe it and some people would think you’re crazy.” but an epileptologist like bui, who is a neurologist with advanced training in epilepsy, would understand that this is occipital lobe epilepsy. the occipital lobe is one of the brain’s four lobes that interprets visual stimuli and information from the retinas of the eyes.
seizures can look like staring spells, while others cause the person to collapse, shake and become unaware of what’s going on.
“you could describe music from your grandmother’s kitchen and the smell of warm cookies and her perfume and the warmth of her hug. and then you black out. an epileptologist would understand limbic seizure,” she explains. an aura or sensations can mark the beginning of a seizure before it spreads electronically.
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what triggers a seizure depends on the individual, according to epilepsy ontario, but possible commonalities include:
- not taking anti-seizure medication
- other medications that are taken in addition to the anti-seizure drug
- internal factors like stress, excitement and emotional upset, lack of sleep, menstrual cycle, and fevers in children
- alcohol can affect how the liver breaks down anti-seizure medication
- poor diet with nutrient shortages and stimulants like tea, coffee, chocolate, sugar, sweets, soft drinks, excess salt, spices and animal proteins may trigger seizures by suddenly changing the body’s metabolism
- very warm weather, especially when there is a sudden change in temperature
- videos and flashing lights or the “strobe effect” from fast scene changes on a bright screen or rapidly changing colours or patterns.
about one in 10 people will have a seizure in their lifetime, but one seizure is usually not epilepsy. some forms of epilepsy have now been linked to specific genes. scientists say that everyone inherits a seizure threshold which determines how susceptible you are to seizures, but in most cases, epilepsy develops without any family history of the disease. it can happen at any age, but there are rising numbers of cases in children and seniors.
if a parent has seizures, the likelihood of passing epilepsy to their child is estimated to be low, about six per cent, compared to a one or two per cent risk of epilepsy in the general population, says the canadian epilepsy alliance. any abnormality in the brain can lead to epilepsy, like head injury, brain tumour, lesion, brain injury during fetal development, birth trauma, stroke, or the aftermath of infectious diseases or substance abuse.
bui was drawn to her specialty because of its complexity and unique challenges. “i cannot think of a more complex organ than the brain. every single organ can be transplanted except for the brain. we’ve got cardiac transplant, we’ve got kidney transplant, we’ve got liver transplant, but we haven’t yet been able to transplant the brain. there’s something very special about that because the brain is our heart and soul. when we lose our brain, we lose our identity.” she says her work aims to enable patients to define their identity separate from their disease.
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epilepsy stats in canada
the public health agency of canada reports statistics on epilepsy with data from the canadian chronic disease surveillance system, the most recent covering 2013 to 2014.
- the prevalence rate is about 1 in 100 canadians, roughly 300,000 canadians
- of those, 42,000 are children and youth, while 256,000 adults (to put this in perspective, the number of people living with epilepsy is twice the population of prince edward island
- an estimated 54 new cases are diagnosed every day for about 20,000 canadians (5,000 children and youth and 15,000 adults in 2013 to 2014)
- prevalence in adults higher than in children and youth – 1 to 19 years: 545 per 100,000 individuals; 20-plus years: 892 per 100,000 individuals
- incidence in children and youth higher than in adults – 1 to 19 years: 60 per 100,000 individuals; 20-plus years: 53 per 100,000 individuals
the agency also points out the proportion of canadians living with epilepsy over time, referencing 2005-2006 to 2013-2014 stats, is up by one-third in children and youth and by one-quarter in adults, the results of “an increasing rate of newly diagnosed epilepsy cases in children and youth and a decreasing rate of death due to any cause in canadians with epilepsy.” about 60 per cent of newly-diagnosed patients are either young children or seniors.
after headaches, epilepsy is the most common neurological disorder, and among seniors, epilepsy follows dementia and stroke as the third most common neurological disorder, according to the canadian epilepsy alliance.
recent studies have uncovered a higher prevalence of epilepsy in indigenous populations in canada. a team of epidemiologists and neurologists at the university of saskatchewan, for example, found that epilepsy is twice as common in indigenous canadians. with the canadian national incidence rate at 62 new cases of epilepsy per 100,000 people per year, the rate for self-identified first nations patients is 122 per 100,000 per year.
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their study, published in seizure: european journal of epilepsy in 2018, noted that health problems such as stroke, dementia, and brain tumours that increase with age also increase the likelihood of epilepsy. the researchers used saskatchewan health records from 2001 to 2010 to gather data and separately examine records from patients who self-identified as status first nations people. the data was age-adjusted to be representative for all of canada.
the authors note that inequalities in socioeconomic circumstances and education may pose differences in epilepsy risk, but regardless of the health indicator explored, canadian indigenous peoples have been shown to suffer a disproportionate burden of epilepsy with poor outcomes.
dr. marcus ng, associate professor of neurology and director of the dreamspike research laboratory at the university of manitoba. his team is on a mission to understand why epileptic activity breaks through the usual calming influence of rem, or rapid eye movement, sleep. lack of sleep has long been associated with triggering seizures in some types of epilepsy because it can change the brain’s patterns of electrical activity.
ng decided to look at the annual dramatic shifts in the arctic’s day and night patterns that impact sleep to see if these shifts have an effect on seizures. he focused on status epilepticus – a medical emergency of long or repeated seizures without regaining consciousness – in the kivalliq region of nunavut. there, people in status epilepticus are flown by helicopter to a single hospital in winnipeg, mb, and his research looked at 11 years of data on emergency evacuations.
“the data set was not small. they saw about 10 cases of status epilepticus each year, in a population of just over 10,000 people. that translates to the highest annual incidence of any published study, anywhere in the world – and it was significantly higher than overall canadian estimates,” ng told the international league against epilepsy in a podcast.
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he also found that about 90 per cent of people in kivalliq are indigenous, most of them inuit. they comprise geographically isolated communities with no roads and local nursing stations if they choose to seek care. two of the larger communities have health centres with doctors, but the other communities will have a travelling physician visit for about a week every couple months. there is only limited neurology treatment available in winnipeg. ng’s work, published in the open access journal of the international league against epilepsy in 2021, brought to light the disparity in care access for remote populations in canada.
his team also found that 19 per cent of the emergency evacuations took place in may, the first full month of the year with 24-hour daylight, along with a clustering of evacuations in april, when darkness is gradually replaced by dusk. the findings suggest the increase in seizures may stem from people getting less sleep because of more daylight.
impact of epilepsy on canadian society
the main goal in epilepsy treatment is to try to obtain seizure freedom, but one-third of patients, or 100,000 canadians, are resistant to medication and burdened by the life-altering challenges of the disease. these patients face a higher risk of depression and anxiety, stress, cognitive issues, and the inability to drive because of seizure-risk, for example.
“their top three concerns are: impact on mental health, financial independence (employment and livelihood), and fear of stigma,” writes laura dickson, president of the canadian epilepsy alliance. “this demonstrates the devastating impact of epilepsy on families, ability to earn a living sufficient to maintain a household, educational prospects, and the accompanying toll these stressors have on physical and mental health.” she and other advocates are calling for faster access to promising new medications like xcopri (cenobamate), which was approved by health canada in june. this process alone can take anywhere from six months to two years to review drug safety and efficacy information. xcopri is now under review by provincial health agencies for approval for coverage by their respective drug plans.
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even for people who have success with medication, there are direct costs of medications, medical supplies and respite care, depending on the person’s needs. the economic impact on families and the canadian economy, including healthcare costs and employment, is substantial.
researchers in pediatric neurology at dalhousie university in halifax recently looked at the data on the individual and household impact of epilepsy on financial income. their work, published in epilepsy and behavior last december, analyzed data from the national population health survey of neurological conditions within the canadian community health survey (cchs), a canadian population‐based cross‐sectional survey that collects information related to health status and also includes total household income.
“we saw a dramatic negative impact on reported household income among canadian households reporting at least one member with active epilepsy. this household income disparity of 17 per cent was surprisingly higher than the impact of rural versus urban households, immigrant status and households with secondary versus post-secondary education status,” the researchers say, noting patients and family caregivers may face significant economic and employment challenges.
in 2018, the canadian epilepsy alliance released a summary report of a national survey of people living with epilepsy and its impacts. the most common challenges included lack of independence (inability to drive), impact on social life, financial strain, access to social services and government disability benefit programs (while classed as a disability, there are eligibility criteria based on severity), and access to well-trained epilepsy specialists.
on average, survey respondents reported waiting nearly four years to be diagnosed with epilepsy, and almost one year to be seen by an epilepsy specialist: 40 per cent say they see only their general practitioner or family doctor regularly, and only 30 per cent have had a consultation with an epileptologist, a neurologist who specializes in epilepsy. about 60 per cent of the respondents who were candidates for surgery waited up to five years.
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according to the report, most people living with epilepsy have also been diagnosed with at least one other condition like depression, migraines or high blood pressure. for 51 per cent of survey respondents, their condition has been linked to another such as stress, trauma or injury. one of the calls to action in the report is improved access to specialized medical care for patients to maintain a productive and healthy life.
resources and support available for epilepsy in canada
the three main associations in canada representing epilepsy are:
experts say that connecting with a support organization is empowering for people with epilepsy and their families. the canadian epilepsy alliance, for example, is a network of 25 community based agencies across canada that offer counselling, education, advocacy, public awareness, employment assistance, children’s programs and support groups.
research in epilepsy is also making strides to address concerns like the impacts of long-term use of anti-seizure drugs and how to prevent side effects, and the long-term effects of seizures on the brain and overall health and development. in 2021, the epilepsy research program at the ontario brain institute brought together voices from the canadian epilepsy community to identify the top 10 research priorities to help prioritize projects, funding and clinical trials.
bui and others in the field are working to break down the stigma for women and promote equal representation in research.
historically, the overwhelming majority of neuroscience research is either based on the male brain model or does not factor sex as a biological factor in research. this impacts female patients because results may not be specific to the unique aspects of female hormones, pregnancy and aging.
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“it’s 0.5 per cent of studies in neuroscience is based on the female brain,” she says. “so we’re going on this tangent of precision medicine when you’ve left about 50 per cent of the population behind, basing research on the male brain.”
looking ahead, research in canada is world-class, bui notes, acknowledging work in genetics for diagnostics and treatments, and giant steps forward in surgery that can bring seizure freedom.
she’s also helping women with epilepsy become more confident in their career aspirations and as mothers, supporting them through pregnancy, postpartum and menopause transitions. she is a partner in the lullaby project in toronto, where pregnant women and new mothers work with professional musicians to write, record and perform a personal lullaby for their baby, and recently published a children’s book for parents with medical illness (with proceeds supporting the women’s neurology program at the university of toronto).
“i’ve seen so many women in my clinic who have broken down to say, ‘i’ve been told i’ve been crazy all of my life,’ or ‘i’ve been told i’ve just been anxious. you’re the first one who has told me that i had a neurological condition,’” bui says of the many emotional conversations she’s had with patients.
“we need to understand not only that the brain is this eloquent organ, but the individual story. this lightning up of the brain in epilepsy is a glimpse of who this person is. so we’re giving meaning to people’s seizures, having them feel seen as themselves, not as their seizures. every single day, there’s someone who says to me, ‘thank you for seeing me for the very first time in my life.’”
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