In 1984, four years after I had established the Canadian Hemochromatosis Society, I found myself in desperate need of funds to keep the burgeoning society going, and decided to write a booklet based (with permission) on the real-life stories that had been shared with me, and including the fruits of my in-depth research to that date. Membership fees had been set at one dollar, but my members proved only too willing to send me a donation of five dollars toward the cost of photocopying the proposed publication, and to provide each of them with their own copy, the title of which would be “Iron: The Other Side of the Story!” Volunteers offered to try and sell further copies to bookstores and pharmacies, and so it became the first book in history to be devoted entirely to the subject of hemochromatosis.

Esophageal Varices: One Possible Outcome That No Euphemism Can Minimize

In “Iron: The Other Side of the Story!” I attempted to point out the danger of delayed diagnosis, and listed such complications as I deemed necessary to enable — and motivate — the average reader to seek medical advice. However, when I sent a pre-print of the booklet to my hero, the late Professor Leslie Valberg of the University of Western Ontario, for his criticism, I confessed that I had tried to focus on the optimistic. There were some aspects of iron overload which I found so dreadful that I could not bring myself to make any reference to them. Perhaps it was because of my husband and daughter and the possibility of frightening them that I could not do so. “I didn’t want to make it too scary,” I admitted, and now I wonder whether I misconstrued his reply:  “You don’t have to make it scary — it’s scary enough!”

A week after the publication of an article on hemochromatosis in the October 27 l986 edition of the Canadian magazine, Maclean’s, a Toronto woman whose friend had succumbed to hemochromatosis the previous year wrote, in a letter to the editor, that the article had been informative but had not adequately described the “intense suffering experienced by victims of this terrible disease.” In another paragraph she referred to it as a “truly dreadful disease.” I agreed wholeheartedly but still could never bring myself to tell it as it was, for fear of terrifying anyone who was already afflicted; always hoping against hope that every person I dealt with would be among the fortunate — the ones who were diagnosed before his or her condition was hopeless. Perhaps if I had painted the true Dorian Grey, the media might have been provoked earlier into helping me.

Article Author: Marie Warder

Born in Ficksburg, South Africa, trained to be a journalist, fell in love - for keeps - at 16, married at 19, wrote novels, played the piano in my husband's dance band for 35 years, had two children, studied to be a teacher, started my own school and …

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