Monday, March 1, 2010

August 18, 1969. My life would never be the same again! --The menace that would take over my life...

Although I was of course not aware of it at the time, Hemochromatosis (caused by IRON — this evil with its grinning mask of virtue which had already surreptitiously crept into my family at birth)reared its ugly head for the first time, on a South African Airways Boeing 40 years ago, between Rio de Janeiro and New York; and then deviously hid itself for seven years … taunting and torturing us until it finally revealed its true self with a vengeance!

I remember the occasion clearly, because it was on this day, in this month, of that year, that I handed to my husband, Tom, a magazine containing an account of the gruesome murder of Sharon Tate (winner of a Golden Globe Award for her performance in The Valley of the Dolls) by the followers of Charles Manson, and he, Tom - whom I would later recall had not been quite "himself" for some time - had to admit that he was having difficulty reading it.

Impaired eyesight

In The Bronze Killer I have written in detail of how, in the August of the year in which his sister was married, and just before he, himself, turned fifteen, we took our son, Shaun, to the United States, where he and I had an opportunity for sight-seeing while Tom, who had to complete a course of instruction related to the new aircraft which the airline had purchased, attended lectures. The only bad memory of that happy time is how he, Tom, kept complaining about his eyesight.

During the long flight to New York there had been no pleasure for him in glancing through newspapers or magazines to pass the time, because the print was blurred. Our son good-naturedly teased him with veiled references to “advancing years” and “the march of time” but soon it wasn’t funny any more because Tom was finding it difficult to discern what was written on the blackboard, and often didn’t recognize his lecturers outside of the classroom. It was decided that he would have his eyes tested as soon as we arrived home. When he could hardly see familiar people wave to him as they danced by at a wedding for which we played soon after our return, we knew he’d have to see about getting eyeglasses.

It was not long after this that he began to exhibit all the classic signs of diabetes: loss of weight; excessive thirst; exhaustion. Strangely, however, it took the doctors a long time to find out what was wrong with him, and I wonder what would have happened if I hadn’t read an article in the Reader’s Digest and demanded that he be given a blood glucose test. This spelled the beginning of a major upheaval in our lives. Nothing would ever be the same again but, fortunately, we didn’t realize this at the time.

I don't know what we would have have become of my husband if -- by the time he had was considered to have a life-expectancy of only twelve weeks -- an old friend, Dr. Paul Porteous, had not fortuitously come back into our lives ... just in time to lead us to a world expert on HH, Professor Thomas Bothwell. Later he and Professor Clement Finch of Seattle would become my mentors.

Looking back over these past 40 years

What happened to him after that has, as I have already said, been well documented. The years that followed were difficult and extremely painful, and, while I tell myself that only the many good things of the past matter, and I had actually planned to let go of Hemochromatosis for good — for the umpteenth time -- at the end of this month -- I find that I still cannot. Not while so many families are still at risk.

Robindale, Gauteng: First Official Meeting of the HSSA after registration. Back, left to right: Dr. Hitzeroth (Director-General of Genetic Services), Bill Robinson (National Treasure), John Scott (National Chairman), Bobby Armour (Ist registered member of the IAHS.) Front: Marie Warder, Ray Davis (a tireless, invaluable volunteer), Simon Overbeek (National Secretary). Whenever Marie was obliged to return to return to Canada, and throughout the long battle to obtain registration, Simon and Bill kept the society going after it had originally been founded in 1987 in Kimberley

Please remember...
Although hemochromatosis is the the most common genetic disorder of all, it is also the only one that is treatable, and all the dreadful complications are avoidable through timely diagnosis and treatment.

I thank God for all that has been achieved with help of my family, the staff and volunteers of the Canadian and other hemochromatosis societies which sprang from it, and the knowledgeable physicians who helped me, and honoured me with their tolerance of my obsession with the disease that killed my husband. We now have a DVD which will introduce many of them.

But, before you read more about the DVD, check this out...

Since so many of us carry at least one gene, some already have the full-blown disease, and many of our loved ones have died from it, do yourselves a favour, set aside 2 hours sometime, and listen to a program broadcast from Edmonton on Monday, February 08/2010. It is probably the most comprehensive and compelling so far, and I believe that this program will do more to create awareness, in such a sort space of time, than I have managed to do in more than 30 years.

Part of the podcast featuring by Michelle Bodon can be heard at http://

1 comment:

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