What is Hemochromatosis (also spelled Haemochromatosis)?
Studies have shown that hemochromatosis is the most common genetic or “inherited” disorder, while, paradoxically, it is the one that is most often dismissed as “rare.” Because it so often goes untreated it is too rarely diagnosed before it is clinically manifest; however most of the suffering associated with the disease is preventable if potential victims are diagnosed in time: and even when it has become symptomatic many of the complications are reversible—but only by timely diagnosis and treatment.
It is transmitted as an autosomal, recessive disorder, and every child will be a carrier. According to the World Health Organization report of the meeting on the prevention and control of hemochromatosis in April 9, 1993, liver cancer is found 200 times more frequently among persons with hemochromatosis than in the general population.
It is a condition that only becomes a disease when sufficient excess iron has been accumulated in the body to cause complications. It is thus the only inherited disorder of which all the complications are preventable, and the only one which is treatable with the right intervention.
It takes time for iron overload to reach a level that will cause organ damage and failure. Men typically develop disease between 40 and 60 years of age, and women after menopause. Diet, vitamin pills with iron, and alcohol consumption all can have an effect.
Who Initiated the Awareness Month?
I am the founder and President Emerita of the Canadian Hemochromatosis Society, founder and President Emerita of the Haemochromatosis Society of Southern Africa, and founder and former President of the International Alliance of Haemochromatosis Societies, as well as the wife of the world’s best-Known hemochromatosis patient: Frederick Abinger Abinger Warder. My motto is: Find us one person and we have hope of saving a family!
How was the Awareness Month Initiated?
The answer can be found in my book, The Bronze Killer.
“It was probably because of the need to channel my own frustration into positive action that I made up my mind, almost grimly, that if Tom lived to see another birthday, the whole country would be told of the ravages of iron overload. There were more than 75,000 Canadians who could die if they were not found; thousands might suffer unnecessarily as a result of abysmal ignorance—but not if I could help it! May 25, l987 (Tom’s Birthday) would be Hemochromatosis Awareness Day in Canada because of what Tom had suffered; and, if one life was saved, someone, somewhere would have cause to be thankful for that day.”
In time it became an Awareness Week, and finally was officially proclaimed “Hemochromatiosis Awareness Month” by the then Canadian Minister of Health.
It is now observed wherever there are people of Celtic (Irish, Scottish, Welsh, Cornish, Breton etc.), British, and Scandinavian origin because what you don’t know about hemochromatosis could kill someone you know—perhaps even you!
Another “disease of the week”? This one is different, because…
Millions of people around the world, especially in Western countries, carry the genes for a disorder which, if not detected in time, results in a myriad of crippling and, far too often, fatal diseases; among them is cancer of the liver, which occurs 200 times more frequently in patients with this defect than in the general population.
There could be someone at risk in every family, business, factory or office—depending on the genetic or ethnic background of the people concerned. In the early 1990s, one Vancouver doctor predicted that it could become the “scourge of the 21st century.” A Mayo Clinic doctor says, ”The disorder has reached epidemic proportions.”
It is the most common genetic disorder (declared thus by the Centers for Disease Control and Prevention) yet many physicians, having been led to believe that it is so rare, are not on the alert for signs of the disease—because they simply do not expect to find them.
It is the only genetic disorder of which all the dreadful complications are preventable. We all probably know someone who has the disease, even if they don’t know it themselves.
Are you the one among the possible four to six “carriers” on a bus, the 50+ on a ferry—or can it be your child who is among the three or more in an average class of school children?
You owe it to yourself to find out!
For more information contact the Canadian Hemochromatosis Society or do a web search for your nearest society.