Saskatchewan continues to be the only province without a dedicated seizure unit for epilepsy patients and with 10,000 people living with epilepsy, the government has yet to commit.
Now the Royal University Hospital Foundation is pledging to fundraise $500,000 for the unit, something Dr. Jose Tellez started lobbying the provincial government for 10 years ago.
“The situation is we only have two beds to do these telemetry investigations,” Tellez, with the University of Saskatchewan division of neurology, said.
With only two beds in Saskatoon serving the entire province, patients with epilepsy can wait up to two years to be treated.
“One of the problems is the time that they are waiting, but the other problem is what can happen during this time that the patient is waiting for this investigation,” Tellez said.
“For example, it’s possible that patients can have fractures, dislocations, all kinds of injuries related to the seizures and it’s also been reported the possibility of sudden death when a patient has a strong seizure.”
In December, Saskatchewan Health Minister Jim Reiter pledged $50,000, but there hasn’t been a clear commitment or update since. According to Tellez, the unit would cost as much as $1.5 million.
Lori Newman’s son, Luke, was diagnosed with epilepsy when he was 19 years old. Because he was going to school in Toronto at the time, Newman was faced with the option of bringing him back to Saskatchewan for surgery or going elsewhere.
The Newmans chose to go to Cleveland, where Luke received the surgery in just over a month. While Luke still has epilepsy, Newman says his seizures are now controlled with medication, something that didn’t work before.
But currently close to 120 others continue to wait.
“There’s no dignity for the people who are being diagnosed with epilepsy in the hospital,” Newman said. “It’s unlike anything we experienced in Cleveland or Toronto. I couldn’t believe the conditions that were back here. It’s got to change here.”
That’s something Tellez continues to advocate for, waiting on the province to make its next move.