John Duncan is afflicted with an inherited disorder that has affected some of his joints and caused cirrhosis of the liver.
The former North Island MP didn’t know he had hereditary hemochromatosis — which causes the body to absorb too much iron from food — until he was treated for another genetic disorder in 2010.
Born with a bicuspid aortic valve, Duncan underwent open heart surgery and received a new valve in December of that year.
He was prescribed iron pills, which he says was standard but was also “the worst thing they could have done.”
Nearly a year later he was treated for a bacterial infection which had established a colony on his new valve. As chance would have it, his doctor ticked the ferritin box on his blood test form. The number came back at 7,000 PPM (parts per million), which is 70 times the normal level. The diagnosis was hereditary hemochromatosis.
“They couldn’t figure out what was wrong with me,” said Duncan, whose ancestry is Scottish on both sides of his family. “If you’re Celtic in background, and a lot of people in our society are, there’s a reasonable chance that you may either be a carrier or that you may have it.”
An estimated 80,000 Canadians have hereditary hemochromatosis but are unaware of it. A diagnosis usually happens in the 40s to 60s age range, Duncan notes.
“By that time there’s been significant damage done, so it’s worthwhile to check it,” he said.
“A lot of people have it but don’t know they have it. It’s a slow and steady buildup of iron which affects organs and joints, and can be quite destructive if it’s left unattended. And yet if it’s detected early, you can avoid all consequences.”
Duncan started a full course of phlebotomies in 2013 to reduce the iron in his system. After 90 weekly treatments, his levels dropped to a normal 100 PPM.
His maintenance regime is now a monthly phlebotomy. Each one costs about $350. He also has an annual ultrasound of his liver to ensure the cirrhosis has not developed into cancer.
Duncan considers himself fortunate not to have developed other conditions caused by iron buildup, such as depression or Type 2 diabetes.
“The first place it usually goes is to the liver, so you can get cirrhosis of the liver from iron buildup,” Duncan said. “That has negative consequences. From there it can attack the heart muscle and it can attack the joints. A lot of people that have it end up with hip replacements. It can be quite painful, too, in the knuckles…I have some of those symptoms.”
Duncan was a guest speaker at a hemochromatosis awareness reception last spring on Parliament Hill in Ottawa. He spoke about the importance of routine testing, and increasing medical costs attributed to the disease.
He says most people don’t have iron levels checked in their blood.
“If we screen for it, the system would save a lot of money and we’d save a lot of grief for people. So there’s a public education component to it.”
For more information visit www.toomuchiron.ca