The Tan that Does Not Fade
From the moment I first heard the word “hemochromatosis” and began to understand that my adored husband’s many years of suffering and remarkable skin pigmentation (which I still describe as a “tan that does not fade”) were the result of “too much iron,” I could only refer to the disease I regarded as the enemy as “the bronze killer.” It is thus not surprising that 32-year-old letterheads of the Canadian Hemochromatosis Society bear the slogan “Fight the bronze killer!”—which did not sit well with one of the physicians whom I had been fortunate to recruit as an ally. “Too melodramatic!” was his pronouncement.
When he stated categorically that he could not work with me unless I changed the slogan, rather than lose the indispensable cooperation of someone I so greatly respected, I removed all mention of the “bronze killer” from the society’s literature—but not from my heart or my mind. With some bitterness—and still mistakenly adhering to the belief that hemochromatosis was purely the technical name for “bronze diabetes” and nothing else—I had taken to referring to hemochromatosis as “the bronze killer” and I had already decided that if I ever finished the book I had started, this would be the title. This must have been uppermost in my mind when I was interviewed by a reporter from the Vancouver Sun in 1982.
The term so intrigued the Sun reporter that his story carried the heading “Victoria Couple Fight Bronze Killer.” Whether this suggested a bizarre crime of some sort, I don’t know, but it certainly caught the attention of his readers and be that as it may, it got me an interview on the CBC radio program As It Happens which could be heard internationally … and the rest, as the saying goes, is history.
A Condition Called Hemochromatosis
For so long we had associated a deep tan with Tom that we had taken his skin color for granted. Because we lived in one of the sunniest places on earth, I certainly could not tell if there was much difference. However, in addition to the bronzing, there were many factors (not least among them the rapid advance of maturity-onset diabetes and the decreasing response to insulin) which pointed to a condition called hemochromatosis which, I was told, was more commonly known in North America as “bronze diabetes.”
Some people, it seems, accumulate an overload through ingesting too much iron—as is the case with many African tribes who cook and brew beer in rusty iron pots—but there was much to indicate that Tom’s hemochromatosis was hereditary. As there was not even one of his uncles alive to testify, it could only be surmised that one or all of those handsome, “tanned” men who had died so young were victims of the same killer—even if the method of attack had varied. Possibly Tom’s father, whose death had been ascribed to “heart failure” at 50, had died as a result of the same condition.
Twelve Weeks To Live!
By this time my husband had no eyelashes, no hair on his legs and no chest hair, his pancreas had virtually been destroyed by the iron which had collected there, and his liver was badly damaged. A young physician who had just returned to the country after studying in Britain managed to arrange an appointment for us at the outpatient department of the “old” Johannesburg General Hospital, where it so happened that — right there, at that hospital, at the right time—there was a renowned physician and researcher who was regarded as a world authority on this condition. Tom was admitted to a ward on his 50th birthday, and Professor Thomas Bothwell, who would become an invaluable ally and respected friend, was very soon able to confirm the diagnosis. Tom’s life expectancy was then thought to be about 12 weeks, but the grace of God and Prof. Bothwell’s intervention gave him two more years to carry on the work he loved with our national airline.
In time, because Tom feared that in the event of his death I might be left alone, we decided that we should join our children in Canada. We had no sooner arrived in Calgary than we investigated the possible existence of a group which we could join, thinking that perhaps we could give similar support to others. If, however, it was a lonely experience to be told that Tom was possibly the only hemochromatotic under treatment in the city at that time, we could not say that this was a totally unexpected discovery. We had only to recall the days while Tom was still with SAA and how, as our trips internationally had taken us from one city to another, we had been distressed to find that in many places so little was known about hemochromatosis that we had to carry with us a letter of explanation from our own doctor in order to get someone to do a phlebotomy (blood-letting).
Then, just before Christmas, 1979, my daughter—who was living in Victoria—phoned and said to her father in a small voice but typically matter-of-fact manner: “Dad, it seems I’ve got this iron thing!” And what could I say when he told me but, “Oh, my God!” I felt as if I’d been dealt a mortal blow. I could neither sleep nor eat. Specters and phantoms walked with me whichever way I turned. My imagination almost killed me. Did she, at 32 years old, also have to become like the “mahogany-colored skeleton” I had taken to see Prof. Bothwell at the hospital, and possibly suffer a change of personality? No sooner was I able to make myself believe that it was true, than I began to agonize about other young people like her. I felt that I had suddenly become every mother; that my knowledge had placed upon me the responsibility for those who don’t know. I still feel that way.
Of course we moved to Victoria without delay. As my consuming distress about Leigh gave way to fervent gratitude for what she could be spared by timely diagnosis, I became almost frantic to make others aware that hemochromatosis is primarily an inherited disorder. Women could indeed be affected and people did not have to reach middle age before the monster would strike. Other families had to know! I could not accept that so few were afflicted; but even if there was only one, he or she had to be contacted! That was how I came to found the Canadian Hemochromatosis Society, and I felt so inadequate! I was unfamiliar with Canadian law, we lived on a South African pension, and I certainly was no authority on this ghastly disorder.
Bothwell and Finch
In my early groping for information and thirst for knowledge, I had read everything that was available at that time, and had soon noticed that much of it had been co-written by a Professor Clement Finch, and, right at that stage it was a particularly sad disappointment to learn that the famous man whose name, like that of T.H. Bothwell was to me synonymous with research into the consequences of iron overload, had been in Victoria and I had missed meeting him.
As this was particularly shattering news, I was driven to write to him, and was honored to receive not only a prompt reply but also copies of one of his most recent papers. I must have read and re-read it a hundred times — as I would devour his communications for many years to come. I was constantly sustained by his support as I founded other, affiliated societies, but I continued to be diffident, perhaps almost apologetic—upstart that I knew I was—for what I was convinced was the lack of credibility among some members of the medical profession.
Then came a letter addressed to “The Founder of the CHS” from Professor Clement Finch of Seattle—a world-renowned authority on iron overload, and one of my heroes—in which he wrote: “Your society is doing a remarkable job in educating people and physicians about a disease I have been interested in for many years. Our ultimate goal should be the institution of Transferrin Saturation and Ferritin Tests in routine screening process. Since the genetic disorder gives no clue as to its presence for many years, the only way we can diagnose the disorder (unless a member of the family has already been diagnosed) before damage is done is to include these tests in the standard blood profile done on all individuals having blood tests. Perhaps your efforts will ultimately lead to this.”
The Piece de Resistance!
The came the piece de resistance! The absolute cherry on the top!
In an editorial in the September 1990 issue of the Western Journal of Medicine, Finch, then Professor of Medicine Emeritus of the University of Washington, stated: “A strong case can be made for incorporating measurements of the plasma iron, iron-binding capacity and ferritin into the routine blood screen. Without such a survey, there is little hope of recognizing hemochromatosis at a time when treatment has the greatest promise. ‘Lay’ societies have been formed whose mission is to disseminate information about the ‘the bronze killer’ … Their information program is so effective that the people they reach are sometimes far better informed than their physicians!”
From a man I held in such high esteem, this was praise indeed.
What a privilege it was, to be able to phone Seattle whenever I needed to; to discuss problems with him, and ask for advice! How sorry I am that I did not get a chance to ask him how he felt when the gene for HHC was mapped! How great it was to be able to refer people in Washington State to him! How I missed that privilege when he retired — but I could still write when was at a loss. Clement Finch passed away on June 28, 2010, at the age of 94.
Bothwell and Finch — what a shame that their wonderful books, like Iron Metabolism (hardcover, 1962, by Thomas H. Bothwell & Clement Finch), are out of print. How unworthy my own is in comparison! I am humbled by the fact that my Wikipedia entry is linked to his — but what an immeasurable honor!Powered by Sidelines