Regina woman recovering in hospital from 'Brain on Fire' disease

Sask. woman recovers from brain disease Watch: After Kerry Wallen began to display strange behaviour, here’s what doctors found. CTV Saskatoon’s Pat McKay has the story.

SASKATOON — In January, Kerry Wallen of Regina went to stay with her sister Sharonette Wallen-Robinson in Edmonton, since her job as a maintenance scheduler at BHP Billiton’s mine in Jansen allowed her to work remotely.

But shortly after she arrived, Wallen-Robinson says her sister started complaining of severe headaches.

“At one point she said that the pain was so bad, like the headaches she’s talking about, she said ‘God, please just take away the pain,’” she said.

She says her sister also began to display strange behaviour: confusion, repeating herself, showing signs of memory loss, hearing things, and even experiencing dreams about her own death.

On Jan. 27, Wallen-Robinson took her sister to the University of Alberta hospital. They wanted to intubate her to have an MRI done of the brain and the pelvis.

Wallen-Robinson says doctors suspected her sister was suffering from Anti-NMDAR Encephalitis, or Brain on Fire.

Dr. Jennifer McCombe, Associate Clinical Professor, Division of Neurology with the University of Alberta treated Wallen at the hospital.

She describes it as a condition where a patient’s own immune system creates antibodies that attack a specific part of the brain.

"Patients with this condition can be quite sick, and are often admitted to ICU. It is thought that the auto immune attack is in someway triggered by the presence of a teratoma. When a teratoma is found, part of the treatment involves removal of this tumor. Despite the fact that patients with Anti-NMDAR Encephalitis become quite sick, with aggressive therapies, they can do very well with little to no residual troubles.”

Wallen was placed in a medically-induced coma on Jan. 29.

“The MRI showed the brain was fine but there was a tumor in the abdomen, and they’d have to go ahead and do surgery and remove it, then start treatment because it was as they had suspected,” said Wallen-Robinson.

Wallen-Robinson says within a week after the surgery, her sister was taken off of heavy sedation, but remained in a comatose state for weeks.

“For the most part she was just there, sometimes eyes open, eyes closed, wouldn’t respond or squeeze my hand, occasionally you’d probably get a squeeze but nothing on command,” she said.

Nine weeks after first being checked in, Wallen-Robinson says her sister is still at the hospital, but is now awake and talking, with a long road to recovery ahead of her.

“Memory issues, kind of things along that line, learning to walk, learning to talk are the main things that I know about at this point,” she said.

“Physical therapy and speech therapy, and also because it's a brain injury that it’s considered, there was quite a few psychiatric issues that comes with her condition, so there’s a team of doctors that will be working with her in the rehab hospital.”

Her coworker at the Jansen mine Alexis Nyandwi started a GoFundMe page to help cover the costs of Wallen’s rehabilitation.

“It’s kind of scary, and we thought she deserves to see if we can help her out,” he said.

“It's not just getting back and saying, ‘Hey I missed eight weeks’, it's relearning a lot of things.”

Wallen-Robinson says she’s taking it one day at a time.

“It's stressful at times, but I'm encouraged that it's for a reason,” she said.

“We've been through this, and we know we can encourage others through this and through everything that's happened.”