High rate of pseudoseizures among Yazidi refugees spurs call for more support

The blackout spells always come with the same feeling — Faeza Mejo feels as though she's trying to scream for help, but someone or something is holding her back.

She then loses all awareness of her surroundings, sometimes for hours. To outside observers, she appears to be having a seizure. She thrashes, clutches at her throat, kicks and punches herself and anything else around her. This happens several times a week.

Mejo's experience mirrors that of many other Yazidi women who were held captive and sold as sex slaves by ISIS militants.

"They think that it's like a dream, that somebody is attacking them. They're fresh in their mind, going back [to] what happened to them while they were captive by ISIS," said Hadji Hesso, director of the Yazidi Association of Manitoba.

The episodes are called psychogenic non-epileptic seizures, or pseudoseizures. They mimic the symptoms of a grand mal seizure, but instead of being caused a malfunction in the brain, they are brought on by severe psychological trauma.

Doctors have scanned Mejo's brain and found no signs of epilepsy. She has been prescribed medication and is going to therapy, but nothing has helped.

Condition caused by trauma

The condition is rare, affecting between two and 33 people per 100,000, according to Dr. José F. Téllez Zenteno, a neurologist and professor at the University of Saskatchewan. Hesso said that, out of the roughly 500 Yazidi people living in Winnipeg, 15 suffer from pseudoseizures.

Canada has taken in roughly 1,400 victims of ISIS, including Yazidis, according to Immigration, Refugees and Citizenship Canada. 

Support groups and doctors working with the Yazidi population here say they need mental health treatment in their first language and the ability to reunite with their families, who may be left behind in refugee camps.

"What we do know about these psychogenic non-epileptic seizures is, usually they are triggered by a strong emotional response," said Dr. Annalee Coakley ​during an interview with CBC's As It Happens. Coakley first talked about the pseudoseizures in The Globe and Mail. Coakley is a medical director with Calgary's Mosaic Refugee Health Clinic who has worked with Yazidi refugees in that city.

"I believe this government has a compassionate heart, and I hope they use that compassion to reunite these families."

Calls for change

The federal government has a one-year window policy during which refugees can sponsor family members who were believed to be dead, but later found alive. Opposition politicians and refugee advocates have pushed the government to extend that window and speed up the processing of claims for Yazidi refugees.

They have also called on the government to expand the definition of immediate family members beyond parents, children and siblings, to reflect the broader meaning that family has for Yazidis.

"When we're talking about Yazidi families, we need to think beyond the extended notion of mom, dad and children," said Fadi Ennab, manager of the community wellness program at Mount Carmel Clinic in Winnipeg. "We need to think of their bigger network of support who could be just like their families if they were missing in a war situation. So uncles, aunties, siblings all those could be part of your family."

Ennab also wants the government to make it easier for family members to privately sponsor their relatives to come to Canada.

Even for someone who is financially independent and has had a reliable income for years, it can be difficult to sponsor a family member, he said. Achieving that independence would take a while for a newcomer refugee who can't even speak English.

In a statement, a spokesperson for Immigration, Refugees and Citizenship Canada said there are fewer than five Yazidis waiting under the one-year window application system.  

"In light of the unique challenges faced by this population, and to further support family reunification for this cohort, the Department will develop eligibility criteria and implement a temporary extension of the one-year window provision for immediate family members of survivors of Daesh [ISIS] resettled under the government's original commitment," the statement said.

Refugees need supports

Mejo, 21, now lives in Winnipeg with her family. In August 2014, she was captured when ISIS attacked her home community in the Sinjar Mountains in northern Iraq. In what has since been declared a genocide, the militants separated men from women, executing the men and enslaving the women and children.

Mejo was sold 15 times before U.S.-led forces rescued her in 2017. While she was in captivity, she gave birth to a son.

She was eventually reunited with her parents and the family came to Canada as government-sponsored refugees.

Lori Wilkinson, a sociologist at the University of Manitoba, conducted a study on Yazidi refugees in urban centres across Canada. She said they are particularly vulnerable in Canada because they were already severely marginalized in their home country.

"They haven't been allowed to go to school, and if they have gone to school, they've only finished, say, equivalent of Grade 5, Grade 6 in Canada," she said.

Many of those who have gone to school didn't receive education in their native language of Kurmanji, but rather in Arabic.

"And so you're certainly not functionally literate in your own language and now you're coming to place in Canada and you're asked to learn English, that's going to be a challenge…. Their first task is to get better mentally before they can learn a new language."

In the House of Commons on Wednesday, Conservative Immigration Critic Michelle Rempel brought forward a vote to adopt a report by the Standing Committee on Citizenship and Immigration which recommends the government expand access to mental health services in Kurmanji.

Rempel said this is important because language differences can make it difficult for Yazidi refugees to accurately describe their trauma.

"For example, one family in Calgary that I know well, one of the women was describing one of her children as crazy, like that was the word she was using," but in Kurmanji, the word she used would more accurately translate as chronically depressed, Rempel said.

Hesso hopes the government will step up to help the women like Mejo who continue to suffer even after escaping from ISIS.

"They all should be receiving same quality trauma therapy and whatever that we can do to make them better and to be part of this society and to forget what happened to them," he said.