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Hemochromatosis Experts Gathering in Canada

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May is National Hemochromatosis Awareness month in Canada, as it now is in many other countries, but it is fitting that the meeting of the International BioIron Society should take place in Canada this year and that experts from around the world should gather in Vancouver

Canada’s First Hemochromatosis Awareness Week

Just before Christmas in 1986, my husband—who had already suffered cruelly for many years because of Hemochromatosis—experienced a heart attack and, grateful as I was that he had not succumbed to it, I wrestled with a consuming anger which threatened to drive even that gratitude from my heart.

A despairing, agonizing fury robbed me of sleep and left me pounding my pillow with clenched fists as I deliberately tortured myself by reliving all that Tom (and I) had already suffered because of iron. I would watch him in the hospital as he patiently waited to pass the next hurdle and the next; take his first shower; walk around the ward. He came home and longed for the day when he could go outside. Every day wonderful people from the home care service came to take his pulse, only to go away shaking their heads because it was so slow.

When he was finally allowed to go for his first walk out of doors, it was an agony for him because of the crippling arthritis in his feet. Reading was little pleasure to him as he could barely hold a book; his hands hurt so much. No matter how rigidly we stuck to the prescribed diet, his blood sugar soared… and, as it did, so did my anger….

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.

A propitious phone call

I knew that it was going to be done but I needed just that extra little shove to get me over the brow of the hill. For a while I could only scheme and ponder; nervously trying just my toe in the water; not quite ready to dive, in case it was too cold. Then, one evening, just before supper, I was called to the phone. I spoke into the receiver and a young girl’s voice responded.. In a well-controlled voice which, by its very calmness, betrayed the underlying emotion, she told me that her father had just died of hemochromatosis and her family had requested that donations in lieu of flowers be sent to the Canadian Hemochromatosis Society. She was just checking for the correct mailing address.

Somehow I managed to speak with equal matter-of-factness as I gave her the information she wanted, and succeeded reasonably well until she said something about his only recently having been diagnosed, “just five years too late!”

I groaned as we talked further and cried myself to sleep that night. The family lived in North Vancouver. How was it possible? We had been active on the Lower Mainland of British Columbia for several years and yet we had never reached this man. I felt that I knew them personally. I shared the sadness in that home and suffered the most terrible sense of hopelessness. As I had done so many times before, I reproached myself for not having done my job properly. I had been given the shove I needed.

A whole week!

It turned out to be not only one day of awareness but a whole week. Mayor Gil Blair of Richmond, British Columbia, was the first to sign a proclamation and it was at the suggestion of his office that the week of May 25 to 31 was designated. Had Mayor Blair and the corporation of Richmond not been amenable, we should probably have abandoned the whole undertaking. The fact that they did so, is due to an incredible set of circumstances.

When I told Tom Mark of CJOR radio in Vancouver about my plans for an awareness day, he proved to be a sympathetic listener and was quite obviously intrigued by the fact that anyone could actually be adversely affected by too much iron. He taped an interview with me, in which I explained what hemochromatosis was, told of the tragic consequences of iron overload and emphasized the need for awareness in order to achieve diagnosis before it was too late. The interview was broadcast very early on the following Sunday morning, to be followed by the expected number of phone calls. Then, having complied with the initial requests for information, we were mystified when, some days later, there was a further spate of inquiries. We could not account for the sudden renewal of interest, as we did not know that the interview had been broadcast a second time.

On the day on which my friend, Kay Keller, and I went down to the mayor’s office in Richmond for the signing of the proclamation, Mayor Blair confessed: “You know, at first I wasn’t going to do this. … We get so many of these requests and I’d never heard of this… this…. hemochromatosis. … But then, last Sunday, I was still in bed and I heard some woman talking about it on the radio and that convinced me!”

I still haven’t been able to confess that I was the woman. I can only be grateful for the co-incidence: for the fact that the tape was played a second time. Once Richmond had given the stamp of approval, other corporations followed suit and, in due course proclamations were signed by the mayors of almost every city in Canada; even by the Government of British Columbia.

Letters to mayors

There were times when I could not believe that I could have let myself and my friends in for such a far-fetched, seemingly hare-brained scheme. Strangely, however, no one seemed terribly taken aback and no one tried to talk me out of it. Kay, sympathetic of the fact that we were housebound, had taken over the banking for the society and had become a regular visitor since Tom’s heart attack. When she arrived one day to find me puzzling over the most efficient way in which to personalize the hundreds of letters which would have to be sent to mayors, she picked up one I had already written, studied it for a minute and then said: “I’ll do it!”

She did, too. I would spend a few hours every morning at the library, scribbling down the names and addresses of more mayors, and in the afternoon Kay would fetch them. By next day each new batch was ready for mailing.

Altogether 523 new diagnoses resulted from that observance. The first nine subjects all worked in or in close association with the offices of mayors to whom we had written. Not one of those people would have known that HH was hereditary and none would have had themselves checked had it not been for our writing. One woman, whose brother-in-law had died of hemochromatosis, had considered the similarity of her husband’s symptoms “pure co-incidence!” Nine people meant nine families to be monitored.

The unexpected success we achieved in the Maple Ridge area of British Columbia must, however, be attributed to more than co-incidence. In every letter Kay and I made mention of our “enclosed green brochure” which, we said, would provide further information. Somehow, one letter was mailed without that enclosure, and it just happened to be the one to Maple Ridge. Some days later I received a telephone call from Alderman Roman Evancic, who informed me that the council meeting at which the requested awareness day proclamation was to be read, was to be televised that evening. He would like to have a few more details before the time.

It was he who remarked that the omission of the brochure had perhaps been providential. We talked a long time because of this and, that evening, as the telecast went out to viewers in that region, there was quite a dramatic turn of events. Referring to the proclamation, Alderman Evancic supported it by telling of how hemochromatosis had affected someone in his own family.

What is hemochromatosis?
The most common inherited disorder of all, fatal if left untreated, but it is also the only genetic disease of which the awful which ravages are preventable by timely diagnosis and treatment.

Tom Warder - the world's best-known hemochromatosis patient.As we approach May 25 this year, I shall be giving thanks for the life of Frederick Abinger (Tom) Warder, for this month of awareness and for all the people who have stood by me over the years. 

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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.dromedarisbooks.com/ Marie Warder

    Re: “There were more than 75,000 Canadians who could die if they were not found…”

    After 25 years we now know that there are HUNDREDS OF THOUSANDS! Because this is an inherited disorder, our motto is “Find us one person and we have hope of saving a family!”

  • Leslie Burke

    You’ve always maintained that you don’t believe in luck, so this will prove how faith invites Divine Intervention.

  • Melinda Terblance

    Did you ever – in your wildest dreams – think that a day would come when so many “iron” experts would meet in Canada during Awareness week? I still have a newsletter dated 1993, in which you wrote about meeting with representatives of the WHO, and later with many of the people who are here in Canada now, during a conference in Israel.