leaders in health: dr. esther bui's mission to transform neurological care for women
7 minute read
dr. esther bui (at right), with her mom ruth, talks about how her family came to canada as chinese–vietnamese refugees, boat people, surviving the long journey across the sea.
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dr. esther bui has always had an affinity to water, without really knowing why. but if she’s on a boat, she’s thinking she’d rather be swimming in the water. now, the accomplished toronto neurologist understands what water means to her. her mother ruth shared a memory with her recently that connected the dots and brought her full circle to her early life-changing years.
dr. bui’s family came to canada as chinese–vietnamese refugees, boat people, surviving the long journey across the sea. her parents took the four young children away from all that they’d known to flee persecution. her dad served as the ship’s physician while her mom struggled with severe seasickness and looked after the kids as best she could amid the suffering that surrounded them. dr. bui, the youngest, was just a toddler. on one very trying day, her mom was openly crying when she hopped onto her lap and kissed away her tears.
“it was like a moment where vulnerability and empowerment met. and she made it her life’s mission to stay alive,” dr. bui says of her mom’s determination. “that thread has stayed with me as the power of a tear drop and the immense mystery and power of water.”
her parents instilled in her what matters most—creating a better life for others.
a parent’s influence guides the way
“i see young moms who have to make life and death decisions, and maybe it’s that inner child in me that says, you know, among our toughest moments, that’s when our strength or gold is mined in the most intense pressure,” she says.
her patients are vulnerable but find comfort and a safe space in her clinic that is renowned for leading treatment for women with epilepsy. she works as a clinician educator and staff neurologist at the university health network’s krembil brain institute, delivering care that addresses what she and her colleagues see as a critical gap in brain health: the failure to recognize sex as a biological factor.
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the reality is that women’s brains and bodies are different than men, which means there’s a difference in disease processes, symptoms, how they metabolize medication and respond to treatments. these are all shaped by biological sex, which plays out in many common conditions like heart disease and stroke. the bigger problem? without recognizing this biological factor, women continue to be at risk of being under-diagnosed and undertreated.
in terms of research, the male body has been biology’s baseline for the last 100 years. so, if you don’t study female bodies, you’re not going to learn anything about them.
“up until 2020, we knew more about the female rodent brain than the female human brain,” says dr. bui. “a huge proportion of studies didn’t recognize that identifying a male patient versus a female patient was important. so some of this data was just generated as sexless study participants, or they only studied male patients because it was too complicated to integrate a woman’s reproductive cycle in. they wanted clean data.”
research bias means women are under-diagnosed and undertreated
this clean data is all male-based data. this fundamental bias has serious consequences for women’s health, she explains, citing one example she was shocked to hear about was the development of pain medications were all studied on men.
“women actually have different pain pathways. and so there’s a reason why with some of the medications we take we’re not complaining of pain. we’re complaining because we’re having untreated pain.”
how does this male focus impact women with epilepsy?
first, the magnitude of the impact: an average of 42 canadians is diagnosed with epilepsy every day, but in 50 to 60 per cent of cases the cause isn’t known. and although women make up half of patients, only six per cent of current epilepsy guidelines specifically address women’s health.
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epilepsy is also known as a seizure disorder, where during seizures some people lose awareness or stare blankly for a few seconds, or others repeatedly twitch their arms or legs in movements known as convulsions. the uncertainties of seizures affect many aspects of a person’s life, including living with the fear of bystanders’ alarmed responses.
long tradition of epilepsy shame and fear
dr. bui talks about the shame that people feel surrounding epilepsy that is deeply embedded in society and reflected in art history for centuries. “epilepsy has been described as the sacred disease. and whenever you mix mythology and religion, there comes a lot of shame. and so epilepsy is one of the most stigmatized illnesses in all of medicine.”
one paper in the journal epilepsy and behavior notes that during the middle ages and renaissance, epilepsy was considered a demonic machination and its cure an act of divine intercession. a similar theme is found in the artistic depiction of epilepsy from the inca and aztec civilizations of that time.
“the immense weight that women carry into this is an individualized shame. for many women, it’s woven very early into their psychology, like young girls, young women, you know, one minute you’re okay, the next minute you’re having a seizure in your high school auditorium. life is shattered for many, many young people,” she says of the fear and misunderstanding that follows them.
also for women with epilepsy, the disease poses certain risks for pregnancy and caring for a child. dr. bui has made fertility counselling and pregnancy care for women with epilepsy a key focus of her work. she understands the complexities where for some women, epilepsy can worsen during pregnancy and certain seizure medications can affect the developing fetus, leading to possible spina bifida or heart defects. because epilepsy is a condition where you can’t simply stop your medication, these women are under a lot of pressure and fear. and down the road as a mom, they’re also concerned they could have a tonic seizure where convulsions may not stop, requiring urgent medical care.
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how will their child respond to this?
as dr. bui explains of the crushing level of shame some women experience, “i’ve had patients who have been told outright by their health care providers, by their families, by their communities, that becoming pregnant would be irresponsible, would be incredibly selfish. some women have been told that they should not have children.”
she’s countered all this with empathy and a mission to open up the conversation, even writing a children’s book for women with epilepsy to read to their children that provides a creative and gentle way to describe their condition and normalize it. and she’s also championed the lullaby project, an incredible program first established at new york city’s carnegie hall, that pairs expecting parents with professional musicians to create original lullabies for their babies. the program came to toronto in 2017 through massey hall and roy thomson hall, where dr. bui enrolled her patients to explore music as medicine in epilepsy and potentially other conditions like anxiety and depression.
holistic treatment for women’s brain health
“we wanted to make this really a space of safety, exploration, creativity and what better place to de-escalate this and open up breathing space than music and art and medicine,” she says. the program has also sparked a study to look at women in the lullaby project compared to women who go through the standard program at krembil, and gather data to share with colleagues and influence standards of care in neurology.
“we noticed that women going through the standard program, there’s a significant consecutive consistent drop in quality of life throughout all trimesters, and it’s at its lowest at delivery,” she explains, even with all the support of her team.
“now, there’s a second group of women getting the same high level of care, but getting the music intervention group. and their quality of life is stable. so there’s something stabilizing about all those tiers of connectivity that happens and if we can scale it through partnerships with established music programs in every single community. if government can recognize the value of music creation in stabilizing maternal mental health, even in the most difficult diseases like epilepsy, what would that do for the whole population?”
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just as important to her clinical work is her teaching, passing on her expertise and awareness of the gender care gap to the next generation of physicians. she lectures at the university of toronto and, among other initiatives, founded an accredited women’s neurology training program, the first of its kind in canada, to train women neurology leaders. there is so much that health-care providers need to know, dr. bui says, emphasizing that the knowledge gap extends beyond pregnancy. neurological health for women is impacted throughout their lives by hormonal transitions of puberty, perimenopause, menopause and beyond.
“the whole mandate of all of us who live in this space is to bring this out of the shadows. shame thrives in secrecy. so speaking about it openly, supporting our patients openly and giving them the safe space to face this head-on with a community that loves and cares for them.”
“the whole mandate of all of us who live in this space is to bring this out of the shadows. shame thrives in secrecy. so speaking about it openly, supporting our patients openly and giving them the safe space to face this head-on with a community that loves and cares for them.”
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