Health crusader sounded alarm about under-diagnosed disorder

Posted March 7th, 2015 by webadmin

Reposted from the Times Colonist

By Katherine Dedyna

A late B.C. health crusader who devoted her life to alerting the public and medical profession about a deadly but underdiagnosed genetic disorder recently garnered praise in the Canadian Senate for her work.

Marie Warder founded the Canadian Hemochromatosis Society when she lived in Victoria in 1980. Now about 20 countries come under its umbrella, all seeking to warn unsuspecting people that unmetabolized iron in their blood can cripple or kill them.

Warder died last October at the age of 87. Her life’s work has “helped many Canadians avoid the progressive suffering, disability and premature death from chronic diseases prompted by hemochromatosis,” said Senator David Wells, as he recently rose to pay tribute to Warder, whose husband was felled by the disease at 42.

The disorder remains relatively unknown, yet the toxic accumulation of dietary iron in the body can be fatal, said Wells, who has hemochromatosis himself.

B.C. Health Minister Terry Lake also commended Warder for working tirelessly to advance the cause of those with hemochromatosis, both as founder of the society and directly with patients for many years as a Delta Hospital chaplain.

“I would like to send my condolences to Marie’s family — her work to raise awareness of this relatively common genetic disorder is a legacy that will continue to save lives for years to come,” Lake said in a statement.

Hemochromatosis causes the body to absorb two to three times the normal amount of iron from dietary sources. When it’s left untreated, the excess builds up in organs, tissues and joints, leading to complications, diseases and death.

The number of deaths is not recorded as such because most victims die of liver cancer or heart attack attributable to hemochromatosis, said past society president Elizabeth Minish.

B.C. was the first province to proclaim an awareness week for hemochromatosis, at Ward’s instigation. The Ministry of Health sent brochures in 1990 to every doctor and pharmacist in B.C. because hemochromatosis was too often dismissed as rare, when it’s actually common.

An estimated 500,000 British Columbians carry one gene and about 15,000 have two copies of the gene that puts them at risk of iron overload, says the Hemochromatosis Society, now based in Richmond.

Statistics from B.C.’s Molecular Genetics Lab show a significant increase in genetic testing for hemochromatosis in recent years.

In 2014, there were about 1,300 DNA tests in B.C. to confirm the diagnosis and another 200 to test relatives of people with a confirmed diagnosis, who are more likely to also have the disorder.

That’s a 60 per cent increase from 2007, when 900 DNA tests were done in B.C. for the disorder. The testing costs are covered by the province. In addition, the Ministry of Health estimates that about 2,600 serum ferritin blood tests have been done each year since 2011, to test for possible hemochromatosis, with a slight increase year over year.

Hemochromatosis afflicts mainly those of Northern European descent. When two people with the gene have children, the offspring are at risk of inheriting both genes and developing the disorder.

Hemochromatosis has been linked to a number of conditions, ranging from chronic fatigue to depression, aching joints, loss of sex drive, discolouration of the skin, Type 2 diabetes, hypothyroidism, heart failure, cirrhosis of the liver and liver cancer.

Warder’s husband, Tom, and their daughter were not diagnosed until they moved to Canada in 1977 from South Africa. Had Tom known earlier, he could have remained healthy through removal of modest amounts of his blood a few times a year.

His death prompted Warder to write her most influential of more than 20 books: The Bronze Killer — a reference to the suntan-like pigmentation hemochromatosis can cause.

The society she operated out of her home for many years, including the three years she lived in Victoria, is now run by a “small, dedicated staff, a national board of volunteers, regional volunteer chapters and a medical advisory board,” Wells said.

Before health reasons forced her to step down as president in 1994, Warder had persuaded the Canadian Red Cross to accept blood donations from people with hemochromatosis, convinced Consumer and Corporate Affairs Canada to have misleading terminology about iron changed on food labels and made a presentation to the World Health Organization.

Shortly before her death, she still managed to help a stranger who reached out to her for information.

As her obituary noted: “Marie was a soldier in the battle against iron.”