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May Is International Hemochromatosis Awareness Month

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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.

 

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About Marie Warder

Born in South Africa, became a journalist and later trained as a teacher before establishing my own school - "Windsor House Academy, of which I remained the principal until I emigrated to Canada. Love to write, and have published 27 books. Played the piano in my husband's dance band for 33years. Founder and President Emerita of the the Canadian, South African and in International Association of Hemochromatosis Societies, http://en.wikipedia.org/wiki/Marie_Warder
  • http://www.soulawakeningsa.com/ Joy Truscott

    Each person carries the ability to fail in their frailty or to soar in their Magnificence. I applaud you Marie and Tom for the dedication of Life work that now has created a ripple effect of Great Value to this world. Sad that you had to say goodbye to your “for keeps” man, so early on your shared Life Journey, but the impact of your work continues. Thank you for your dedication and perseverance in bringing Awareness to the world.
    Joy Truscott

  • Marie Warder

    And thank you for your lovely message,Joy.

  • Pierre Brissot

    Hemochromatosis may represent for some physicians a disease among others ; for the researcher, it can be a way to better understand iron metabolism. But, thanks to your constant efforts and dedication, you remember to everybody that hemochromatosis means, first and foremost, patients who may be heavily disabled and see their life shortened. You are a model for all of us in terms of raising awareness.

  • Marie Warder

    Coming from a person of your stature, this is indeed a compliment.
    When does the iron conference end?

  • Siobhan

    Thank you for starting this awareness program, I am female, Irish and C282Yx2 and overloading but learning to manage, although it is in my family, no one spoke of it…almost like a shameful thing, thank you for helping bring it into the light and where focus can be put on this and maybe, hopefully one day a cure or at least a better treatment than phlebotomies.

  • Marie Warder

    Go to YouTube and click on HEMOCHROMATOSIS AWARENESS ONE, and you will understand why I do this.

  • Melita

    I have been my own advocate for my health. Have had high ferritin levels for a year now but docs werent concerned because I didnt have any known family with hemochromatosis. I began asking questions and demanding to get to the bottom of this. I did get a doctor to who took it seriously and referred me to an inteirn specialist whom I see on Tuesday. My last blood work 2 months ago showed my ferritin levels at +1200 and saturation % 96. Hopefully the dna testing will follow next week and I get some answers. All my symptoms have been passed off as other health issues such as arthritis, menophase and others. Actually looking forward to a diagonis so I can feel better!

  • Marie Warder

    Tuesday is my birthday and I’ll be thinking of you as you are about to be on the first rung of the ladder to better health!

  • Melita

    Happy Birthday on Tuesday and its from the work that you have done and the resources you have developed that I was able to be my own advocate! Thanks for the awareness and if it is determined that I have hemochromotatis I will become an advocate for this disease as little is known about it where I live in Labrador, NL!

  • Marie Warder

    That’s amazing! The highest incidence of HHC is in Nova Scotia and Newfoundland (which both have citizens of Celtic origin). I wonder what the incidence is in Labrador.

    You should contact the Canadian Hemochromatosis Society and ask for the latest edition of their excellent newsletter, “The Magnet.

  • Melita

    I live on the South Coast of Labrador and there are a couple of families who have HHC in the Straits area but none in the area where I live on the coast. My ancestory back 2 generations have scottish heritage mixed with Inuit on my fathers side and my mother is from Northern Penisula in Newfoundland and have english heritage. It would be interesting to know about rates if there were anyway to do screening. I have contacted the CHS and they have sent me out an information package with some great information. See what the weeks ahead will bring.

  • Marie Warder

    Marie Warder Clearly
    my beloved husband, often described as “the world’s best- known
    Hemochromatosis patient” did not die in vain, and, as shattered as I was
    when my daughter developed this — (the most common genetic disorder —
    it seems it was part of God’s plan. Her diagnosis proved that HHC
    could indeed be passed down to one’s offspring.

    May 2013 was observed in many places as “Hemochromatosis Awareness
    Month,” and I am learning about more and more groups formed in more and
    more Caucasian countries. On Facebook there is news about “Hemocromatose
    Hereditaria (Brasil)

    Another Group
    “Experiencias,
    troca de informacoes, base de dados de medicos recomendados por
    pacientes… Tudo sobr…” and another named HEMOCROMATOSITOS. The lady
    who posted this writes, “We are trying to to put this topic in
    discussion in the media here in Brazil. Share experiences and
    information.”