Ehlers-Danlos Syndrome, rare disorder, afflicts Kari Bourque

Posted May 11, 2016

LITTLE CURRENT—The pain of losing her twin sister is never far from the surface, but Kari Bourque takes some solace in knowing that the rare disease that took her sister’s life at age 22, and only days after giving birth to her son, is not bringing pain and suffering to her now.

In January 2010, the Little Current twin sisters, known for their tiny statures and big attitudes, were driving home from Health Sciences North having just visited Kayla Bourque’s new baby boy (who had to be hospitalized at birth) when the unthinkable happened. Kayla took an attack in the car, dying with her sister by her side. A coroner’s report revealed that Kayla had died as a result of a ruptured aorta, but also uncovered something else; the young woman had been living with Ehlers-Danlos Syndrome (EDS) type four, or also known as the ‘vascular type,’ and he contacted Kari to see a geneticist as soon as possible as it was likely that she carried the disorder too.

Following some testing it was confirmed—the disease that took the closest person to Kari was now shadowing her life at every turn.

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