Calgary nurse, doctor save 4-year-old with rare disease - Action News
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Calgary

Calgary nurse, doctor save 4-year-old with rare disease

An Airdrie, Alta., family says they're grateful health professionals in Calgary were able to detect a deadly disease in their son well before it could hurt him. Now the team behind the diagnosis is hoping the discovery will help children around the world.

Airdrie boy has rare condition called takayasu arteritis; doctors hope diagnosis will lead to better care

Ben Anderson is at the doctor's office for a check up. He has a rare disease called takayasu arteritis. (CBC)

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," saidhis motherShannon Anderson. "He looked basically the same as he does right now."

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

Ben has a rare condition calledTakayasu 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 Benif 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," saidBenseler. "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.

Benseleris now working with researchers around the world to find a better way to detect the disease. Sheis the principal investigator of the international networkBrainworks, whichtracks and shares information ondiseases.

Benselerhopes to help develop a blood test bylooking for biomarkers in patients like Ben.