This website is sponsored by friends of the Haemochromatosis Society of South Africa, in memory of Frederick (Tom) Warder, who died in South Africa on July 9, 1992; for the benefit of South Africans, Zimbabweans and other expatriates around the world; and for their families at home, with the firm conviction that ALL the ravages of “The Bronze Killer” are preventable by early intervention, whether by family screening or timely diagnosis. We believe that NO ONE needs to suffer the deadly consequences of what begins only as an inherited metabolic disorder…

When the South African society was established in 1987, it became the first Haemochromatosis Society, outside of North America, the first affiliate of the Canadian Hemochromatosis Society, the first member of the International Association, outside of North America, and the first to operate under the umbrella of the IAHS until its own constitution had been drawn up and accepted for registration by the appropriate authorities. Two groups in the United States were already affiliates and members of the IAHS, when, during that visit to South Africa in November of 1987, Marie Warder was able to establish the HSSA

In due course, South Africa was able to claim many other “firsts”: The first country (and perhaps still the only one) in which a federal government produced and made available a comprehensive booklet on Haemochromatosis; also, with the support of the society’s chief medical adviser, Professor T: Bothwell, the first country in the world in which HH blood was accepted for use by a Blood Transfusion Service.

Produced in both English and Afrikaans, the booklet which the South Africans produced — entitled “Haemochromatosis and You” — provided, in addition to a list of knowledgeable specialists in every province to whom general practitioners could turn for advice, the addresses of trained ‘genetic’ nurses who were available to visit families in outlying areas, for counseling and to draw blood for testing. In time, as some of these nurses became friendly with Marie Warder, they would contribute in a significant manner to the annual national awareness week; especially in May 1994, to South Africa’s participation in the first International Awareness week – which was launched from Johannesburg.

The first International Newsletter also originated in what is now known as Gauteng. July 19, 1992

The Story Behind the Haemochromatosis Society of South Africa

2012-08-21T14:54:00.002-07:00

How The Society Came About

(Relative extracts taken from “The Bronze Killer” with permission of the publishers) As Tom Warder was wont to say, it took very little to get his wife into hemochromatosis campaign mode,” and to her what happened at Jan Smuts Airport, near Johannesburg, soon after their arrival from Canada in August 1987 was hardly very little! It was one of the most traumatic and dreadful experiences of her life. Her husband suffered a heart attack while disembarking from the aircraft and consequently had to undergo surgery. During the three months the Warders had to spend in South Africa while Tom recuperated, “campaign mode” very soon gave way to “combat mode”!

Professor Thomas Bothwell

For years, as awareness of HH had been mounting in Canada, Marie and Tom Warder had agonized about their own people in the country of their birth for, despite the fact that the South Africans had, in Professor Bothwell, what she considered to be a priceless gift, she had come to realize that Tom had been one of the fortunate ones; one of the few. In general, the same abysmal ignorance still existed there as elsewhere in the world. She always insists that all she ever did was to “bring the mouldering wealth of research out into the open; off the shelves and into the light!” An ardent champion and admirer of those who are involved in research, Marie has constantly bemoaned the fact that the results of all that research are not “filtering through to where it is most needed — into the ranks of the family practitioner and from there to the patient!”

As soon as Tom was mobile once more, he and his wife went to see Professor Bothwell to tell him of her intention to establish a society in South Africa and she was subsequently interviewed by Tony Younghusband of the Johannesburg “Star”, which led to a story in a popular magazine, "Personality”. Shortly after that, during a prolonged stay with her sister in Kimberley, Marie addressed the National Council of Women, the “TocH” and two chapters of Rotary, which provided her with the opportunity to launch the “Haemochromatosis Society of Southern Africa.” The Kimberley-based “Diamond Fields Advertiser” featured a comprehensive report on these activities, and no sooner had that appeared, than it transpired that all the other newspapers of the Argus group had picked up the “Star” article. News of the newly established society was most decidedly “out”.

Concerned about the possibility of breaching the sanctions which existed at that time, Marie had naturally consulted her valued friend in Canada, Professor Leslie Valberg - then chief medical adviser to the CHS - to be greatly reassured by his reply: “This kind of thing transcends politics!” There was, however, still the problem of what was to be done with mail that would be directed to addresses of friends in South Africa after she had left; and how was she going to conduct the local affairs of the new society from a distance in the meantime?

Friends Came to the Rescue

They looked up a few old friends, among them Simon Overbeek, whom they had known since their late teens. A former colleague of Tom’s at South African Airways, Simon had, in fact, taken their wedding pictures and most of the baby snapshots of their daughter, Leigh. Marie would later say that she believed she had been ‘led’ to speak to their old friend about the society she had just launched. Few people knew them longer or better, and Simon was, moreover, both concerned and genuinely interested to learn about hemochromatosis and what it had done to Tom. Since leaving the airline, he, Simon, had undertaken further studies and had branched into a new career — one that had made him the most suitably qualified person she could ever have approached. To her astonishment and undisguised delight, it did not take much persuasion to get him to commit himself to working with them. At his suggestion, they also went to see Bill Robinson, a respected secretary of companies and former neighbour of theirs. He agreed, as readily as Simon had, to come on board. Whenever the Warders were given credit for the part they played in promoting HH awareness in South Africa, they would always insist that much of the credit should go to these two dedicated gentlemen — motivated by friendship to involve themselves in a mountain of work which they surely did not need in their already busy lives.

At that stage, every publication of the Canadian Hemochromatosis Society carried the footnote, “Produced for the International Association of Haemochromatosis Societies.” This simply meant that Marie had written it, her son, Shaun, had made it camera ready and, with the exception of the comprehensive brochure which the Government of British Columbia sponsored in 1990, if there was no money in the “Hemie” account, Tom had paid for it. Any emerging or fledgling hemochromatosis society in other parts of the world was free to use it with due acknowledgement to the IAHS. Later Guy Fernau, founder of the Haemochromatosis Society in the United Kingdom, related how, before his own material could be prepared, he only needed to scan the Canadian pamphlet and change the spelling. The newly formed HSSA was, however, not blessed with a scanner. The only problem was that “hemochromatosis” (without the ‘e’) and convincing readers that that was not an error - but also quite an acceptable alternative!

Although she was only able to give family addresses to which requests for further information could be directed, she was inundated with mail. Many of these requests came with the explanation: “I think I might have this bronze killer.” Fortunately she had brought a supply of brochures with her, all bearing the names of future members until the day when the HSSA became fully operational and they could be forwarded to South Africa. Concerned about the possibility of breaching the sanctions which existed at that time, Marie had naturally consulted her valued friend, Professor Leslie Valberg - then chief medical adviser to the CHS - to be greatly reassured by his reply: “This kind of thing transcends politics!” There was, however, still the problem of what was to be done with mail that would be directed to addresses of friends in South Africa after she had left; and how was she going to conduct the local affairs of the new society from a distance in the meantime? Before returning to Canada, she and Tom made several visits to his ailing brother; more discouraged after each. They also looked up a few old friends, among them Simon Overbeek, whom they had known since their late teens. A former colleague of Tom’s at South African Airways, Simon had, in fact, taken their wedding pictures and most of the baby snapshots of their daughter, Leigh.

Marie would later say that she believed she had been “led” to speak to their old friend about the society she had just launched. Few people knew them longer or better, and Simon was, moreover, both concerned and genuinely interested to learn about hemochromatosis and what it had done to Tom. At that stage, every publication of the Canadian Hemochromatosis Society carried the footnote, produced for the International Association of Haemochromatosis Societies. This simply meant that Marie had written it, her son, Shaun, had made it camera ready and, with the exception of the comprehensive brochure which the Government of British Columbia sponsored in 1990, if there was no money in the “hemie” account, Tom had paid for it. Any emerging or fledgling hemochromatosis society in other parts of the world was free to use it with due acknowledgement to the IAHS.

The Warders went back to South Africa early the following year and were grateful for the opportunity to “house sit” for Simon and his wife. Because of the habit of clenching her jaw under stress and grinding her teeth in her sleep, Marie had developed an extremely painful problem in her jaw, as a result of which she had to undergo quite extensive surgery and treatment. This, in turn, resulted in a protracted stay in the country, just as Tom’s heart surgery has done the previous year. The use of the Overbeeks’ lovely home close to the hospital where they could conveniently visit their brother was thus a godsend — as was the added blessing: the use of a car.

Mike McCann

As far as the Haemochromatosis Society of Southern Africa was concerned, the time that Tom and Marie spent in South Africa that year had the promise of being extremely fruitful and their efforts were enhanced by a number of circumstances, one of which was at the same time tragic yet truly fortuitous. Mike McCann, a colourful, popular, and very well-known journalist, was found to be suffering from hemochromatosis only weeks before his death. So greatly was he revered and loved by his colleagues that they took turns to watch at his bedside, and it was one of them, Heidi Holland, who interviewed Marie. Her three-page story entitled “The Bronze Killer”, appeared together with a full page colour photograph of Mike in the magazine supplement of the widely read “Sunday Times” (without which no Sunday is ever complete in most South African homes).

‘Rusty’

It just so happened that elsewhere, in that same issue of the newspaper, there was a review of the Hemingway biography (with a mention of hemochromatosis) as well as the prominently placed story of Vivienne Murray who had undergone premature menopause in her early thirties because of hemochromatosis. After correct intervention on the part of an astute physician, she had made medical history by becoming the first woman ever to give birth after having been so badly afflicted by iron overload. The article was made more compelling by a picture of Vivienne, her husband and infant son, with a charming footnote to the effect that the baby — later to be christened Christopher — was, at the time the photograph was taken, still being referred to as “Rusty”. As a consequence, media coverage relating to the disease and the establishment of the society was excellent; so was advance publicity for Marie’s book, which tied in with several stories. Once again it was the “The Bronze Killer” reference that had captured the attention.

Visa Problems

Again and again, after every especially encouraging development, Marie would say that she had been able to make more progress in South Africa in one year, than she had in Canada in ten; but no matter how exciting and rewarding that progress seemed at the time, it was frequently followed by a setback. No sooner would everything be fine, than something would go wrong, and the first discouragement came as Marie and Tom were trying to deal with a flood of requests for more information, triggered by the recent publicity. Because the Warders were no longer South African citizens and would have to leave the country before their visas expired, it was decided to hold the first meeting of the newly-established society in the living room of the Overbeeks’ house before their departure.

Naturally, the most pressing problem on the agenda was the election of an executive committee. There had not yet been time to do more than open and read the mail; this, together with other important documents would be forwarded in due course to the newly-elected secretary, Vivienne, for processing. No sooner had Tom and Marie arrived back in Canada than she received shattering news…. the entire parcel of correspondence had gone astray. It was as if most of the events of the past months had never happened! Nevertheless 1990 was a banner year in many respects. Although Tom found the summer heat in South Africa very trying, he and Marie had to be in Johannesburg on New Year’s Day if they wished to take up the offer they had made on a conveniently situated bachelor apartment. They also needed to be back in Canada in good time to implement a number of projects for AWARENESS90, their most ambitious undertaking yet, for which a number of plans had already been set in motion.

With the assistance of Tony Leysath — Marie’s godmother and a staunch supporter of their efforts — and, out of funds they had not been able to take out of the country when they emigrated, they were able to purchase a car. They also managed to find a post office nearby where they could have a mailbox for the society. Within a week of their arrival, the Southern Courier ran a front-page story under the headline, “Canada’s Iron Lady visits the South.” Shortly after that, a journalists who was by now her friend, wrote an article about the tragedy of the lost mail, as a result of which many of the former correspondents did write again. Membership was further increased by Marie’s appearance on “Good Morning South Africa”, a bilingual program on which she spoke about the Bronze Killer for the first time in both languages — surprising herself as much as the interviewer!

http://www.youtube.comwatch?feature=player_embedded&v=AdJtKU7Kdec