Calgary Nurse, Doctor Save Boy with Rare Takayasu Arteritis

July 9, 2015

For a child with a rare blood disease, Ben Anderson is lucky.

The four-year-old’s condition could have gone undetected until it caused organ failure if it weren’t for the quick action of health-care workers at the Alberta Children’s Hospital. They spotted it earlier this year.

“There was really no symptoms,” said his mother Shannon Anderson. “He looked basically the same as he does right now.”

Her boy is high energy, quick to jump on monkey bars or a swing despite the many treatments he’s been having and the blood trouble in his veins.

Ben has a rare condition called Takayasu Arteritis.

The disease inflames blood vessels, limiting the supply of blood to the kidneys, heart and liver.

Only about 50 to 80 children in Canada are known to have this type of vasculitis, according to Dr. Susanne Benseler, an expert on the disease.

Many go undiagnosed

Benseler says many go undiagnosed, and most aren’t detected until organ failure sets in.

That’s what could have happened for Ben if a nurse at the hospital hadn’t noticed his high blood pressure when he was in for a check-up.

“I think it would have been terrible for Ben,” said Benseler. “It’s a terrible disease.”

But thanks to that nurse, and Benseler’s research team, they’ve been able to treat him early and reduce the inflammation.

Shannon says she and her husband, Tyler, could not be more grateful to be in the right place at the right time.

“To think just how everything sort of aligned,” she said. “That we were able to catch this when we did, that he was able to start treatment the day after we got home — it’s unbelievable.”

The four-year-old isn’t cured, but his condition can be managed and monitored.

Benseler is now working with researchers around the world to find a better way to detect the disease. She is the principal investigator of the international network Brainworks, which tracks and shares information on diseases.

Benseler hopes to help develop a blood test by looking for biomarkers in patients like Ben.


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