Saturday, June 12, 2010

Frederick Abinger (Tom) Warder - the world’s "most famous Hemochromatosis patient."

Frederick Abinger (Tom) Warder (May 25, 1925 – 9 July 1992), the world’s "most famous Hemochromatosis patient," was also an athlete, a musician and an inventor whose expertise in the field of mechanical electrical and gyroscopic instrumentation was acknowledged internationally.

Tom Warder was born in Johannesburg, South Africa. Today he is known to have been the catalyst, together with his then newly-diagnosed daughter, for his wife's establishment of the Canadian Hemochromatosis Society in 1980,the Haemochromatosis Society of South Africa,1987, the International Association of Haemochromatosis Societies and affiliated Hemochromatosis societies around the world. He was also, among other things, a self-taught musician and band leader, a swimmer, an inventor, and was said to to have possessed remarkable physical strength, until the genetic disorder which causes the body to accumulate too much iron caught up with him, crippling his hands and finally causing his death.

Reminiscing about the time when they were both "servers" at St Boniface Church in Germiston, and referring to Warder's splendid physique, a friend who later became the rector of an East Rand church recalls that Warder once made a "magnificent Roman centurion in a Passion Play!” He also contributes the information that, by organizing monthly dances, both in the Church Hall, and in the "Rec" centre of a gold mine in the vicinity, Warder's band helped to raise enough money to build All Saints' Anglican Church in the nearby parish of Primrose.

An announcement issued by former filmmaker Eugene Boyko, in 1992, best sums up the association with Hemochromatosis - the world's most common inherited disease.

A memorial service for Tom Warder — the world's best-known hemochromatosis patient — will be held at St. David's Anglican Church in Tsawwassen at 2 pm on Wednesday, August 12, 1992.

"More than a month after his death in Johannesburg on July 9, during a farewell visit to South Africa, tributes continue to arrive at his Surrey home and Hemochromatosis offices in many countries, from people around the world; people who owe their lives and those of their families to a man who, for 25 years, courageously fought the ravages of the most common but little-known inherited disorder which results in an overload of iron in the body; a man who, together with his newly-diagnosed daughter, became the catalyst for the establishment of the Canadian Hemochromatosis society and many other similar organizations which now constitute the International Association of Hemochromatosis Societies.

"For the past 12 years, as he helped his wife, Marie, to promote awareness of hemochromatosis, Tom appeared as what he termed "Exhibit A” on numerous television programs in Canada and overseas -- the most recent of which was the interview with Eve Savory on the CBC program, NewsWorld. He was interviewed more than once by Deb Hope of BCTV, and has been the subject of dozens of radio, newspaper and magazine interviews including an article in MacLean's in October 1986. His story is told in the book, "The Bronze Killer," which was mentioned in the citation for the Canada Volunteer Medal of Honour and Certificate of Honour presented to his wife in Ottawa in 1991.

"Before his death, he was delighted to be among the patients treated at the recently-established Hemochromatosis Clinic, Shaughnessy site in Vancouver, which came into being as a result of the tireless campaigning on the part of his wife and family, and he lived to hear the Director-General of the Department of Genetic Services in South Africa, the country of his birth, announce the start of an intensive program of awareness.

"Hemochromatosis is ten times more common than other well-known genetic diseases such as cystic fibrosis. It is the only inherited disorder of which the complications, which include diabetes, arthritis, cirrhosis of the liver, and a host of other involvements, are preventable by early diagnosis and treatment. Untreated it is fatal. In Tom Warder's case, diagnosis came too late, but, because of him, many people around the world (and their families) will live."


Tom’s parents, were said to have been able to "bring tears to one’s eyes" as a classical string duo, but once their sons came along, they preferred to play dance music with them. Leicester (Pop) Warder was an incredible swing, boogie and ragtime player (Marie, Tom's wife, would later confess that she could never master the ' boogie' bass of 'Alligator Crawl' the way Leicester could) and Rae, the mother of the family could easily have been mistaken for Stéphane Grappelli, the French jazz violinist who, with guitarist Django Reinhardt, founded the Quintette du Hot Club de France.

The fact that the Warders could create a sound resembling that, especially in a era when the Hot Club of France (probably the most famous of all string jazz bands) was in its heyday, was the secret of their enormous popularity, and Tom - young as he was - had already, fortuitously, begun to take his father's place as the leader before, lying about his age, he enlisted in the SAAF. It was a foregone conclusion and he was prepared for this upon his return home, but not for the manner in which it came about.

He and his brother, Selby, had no sooner returned to civilian life, when this very close family was shaken by an indescribable disaster, and for his fianceé to have to step into the breach and take Leicester Warder’s place at the piano – only three weeks after his sudden death, only three weeks after she and Tom, then only 21, had become engaged – was a daunting experience for his 18-year-old daughter-in-law-to-be. She rose to the challenge, however, and ended up playing with Tom and his band for 35 years!

Considered one of the finest swing mandolin players in the world at that time, Tom Warder was also one of the first to electrify an acoustic mandolin. In years to come, until his hands were crippled by Hemochromatosis, he would become the inventor of the "Gyroscope Brake" for aircraft, and also of the incubator in which sick children were conveyed by South African Airways, for treatment by the legendary heart- surgeon, Christiaan Barnard, frequently accompanying them on the flight.

The Band of 27 Squadron SAAF Left to right:"Lofty" Tarr, Holly White, Ginger Baine, Tom Warder, Selby Warder, "Frikkie" Webb. This group - the "unofficial" band of the squadron - was named for their Ventura aircraft, used to protect shipping around the Cape of Good Hope, and to bomb Italian shipping in the Mediterranean. The picture, taken in front of the French Foreign Legion headquarters in Oran, shows the group standing on desert sand, Tom on the right of the drummer, with his brother, Selby beside him) and because of where they are, there is no piano. Instead, the pianist, Holly White, plays the accordion.

"Birzebbugia Boogie" was spontaneously created and first played in 1944 by Tom Warder and THE VENTURIANS on the back of an army truck between Birzebbugia and the SAAF camp in Malta during WW2. Herewith a reference - taken from the book With no remorse...!-- to the three-month-long voyage on the Monarch of Bermuda, from Durban to the war zone (a voyage during which a number of those on board died), and later on the island of Malta: ….

“What had kept them sane in the suffocating, foul-smelling lower deck of the ‘Monarch’ was music, and what seemed to glue them together still, on Malta, was music. Men of different ranks played together in their band which they called ‘The Venturians’, out of affection for their Ventura aircraft and, later in Malta, as they were taken from their billets to the airfield and back, or just riding around the city, a group of them would inevitably be playing on the back of the truck that transported them.

"They raised our spirits every time we heard them go by; singing everything from "Sarie Marais" to "When You're Smilin'," "Bye, bye blues," "I can’t give you anything but love, baby!" – and including the occasional, rousing rendition of the "Battle Hymn of the Republic." When it happened to be "Hold him down, you Zulu Warrior!" the thumping rhythm of their feet was carried to us on the breeze; long before we were able even to hear the lively chorus of upraised voices; long before they came in sight”


After his discharge from the SAAF, where he had already begun to make a name for himself during WW2 as an instrument technician, he knew exactly what he wanted to do with his life. Apart from marrying and having a family, he wanted to become an "gyro expert". He joined South African Airways and there was given the opportunity of undergoing extensive training with many other airlines includig Qantas and Ansett Ana in Astralia, Lufthansa in Hambrg, Germany, United in the USA) Boeing and Airtbus in Toulouse, as well as manufacturers of flight instrumnets such as Sperry, Delco Electronics - and others in several countries too numerous to list. A time would come when he would be invited to demonstrate his own inventions.

Before leaving South Africa in 1975 he had for some years been seconded by his airline to the Technical College in Johannesburg as a tutor, lecturer and examiner for the training of apprentices, and his resume stood him in good stead when he immigrated to Canada where he was to find that a letter of recommendation had been sent aheard by Colonel Stanley Walters of Sperry in Johannesburg. This gained him an entré.

Warder's inventions were invariably inspired to by a desire to overcome what he saw as an immediate need; for instance, the devices he constructed to enable his wife to carry on with her work as a writer and public relations officer for an leading international company, while trapped in a body cast for many months. These were later donated to a clinic, and would prove to be the prototypes for others still in use.
Among his many other inventions, these stand out:

The incubator

Translation of incubator text:
"For some years South African Airways have been using an incubator for transporting tiny babies who require a precise amount of oxygen and heat just to be kept alive during the journey.

"Recently the urgent need for a larger incubator, for the transport of children older than a year, became became very clear. As a temporary measure, Mr Tommy Warder of the Instrument shop, designed and built an incubator out of pieces of scrap metal which were already available in the workshop.
"The framework fits neatly into the floor and has proved to be so successful that the Dept. of Flight Medicine has decided to retain it as a permanent fixture for the transport of older children."
[During the Christiaan Barnard Era, children from around the world were brought to South Africa for heart surgery, and Tom Warder often accompanied them on the flight. While Barnard is mainly associated with transplantation, numerous patients afflicted with other heart defects flocked to the famed Grootte Schuur Hospital, then, and still do so today.]

The "gyro" brake
Tom Warder was the first to introduce a gyroscope brake into airline navigation.

“Airline delays will be shorter now." Kempton News, December 15, 1972.
“Much time and inconvenience to passengers and crew of South African Airways will be saved by a new device designed by a Kemptonian, Mr. Tom Warder of Kempton Park. In actual fact, his invention will also save time for other airlines all over the world once his idea has been released by SAA.

“Although Mr. Warder was not available for comment and his idea is still confidential, Kempton News has it on good authority that the manufacturers of gyros as well as almost every airline in the world are interested…”
[Gyroscopes are, of course, used in navigation instruments in ships, planes, and rockets and South African Airways was the first airline to benefit by the “spectacular invention" which saved the airline millions in the days when the gyros used to 'topple' after landing on the island of Ilha da Sal on the way to Europe and North America.]

Tom's father, Leicester Philip Warder has been credited with the invention of the prototype of the Grease Belt method used for sorting diamonds in Kimberley, South Africa, many years ago, and I have it on good authority that General Smuts had been advised of this. Another source has it that Warder senior had also invented a revolutionary fuel aspiration device in the early 1930s, far superior to anything that had been used up to that time, but, as the story goes, it was unfortunately bought out by some oil company, only to suppress it.

Be that as it may, it was definitely as a result of spending so much time with his father in his workshop while the latter was involved in creating what was always referred to as "The Gadget" (designed to overcome gravity), that the young Tom became fascinated with Gyroscopics at an early age.
World's first finger-removable bottle top

The pop top machine prototype

"Easy does it! A crown cap for beer, soft-drink and other bottles, which can be removed easily with the fingers, has been developed by Tom and Selby Warder, two South African inventors, and an American associate, Peter Amato, and is available through De Solla agencies, Johannesburg"

Once the news concerning the possibility of converting conventional Crown Cork's into the finger-removable "PopTops" was circulated, inquiries came in from interested parties around the world. Numerous samples were demanded, and promptly had to be dispatched to the USA and elsewhere almost daily. That, in turn, meant that samples had to be made ready after Tom came home, from work each day, and so, each night, before the family went to bed, large quantities of 'regular' caps were fed into the machine, and once it was switched on, the steady thump-thump went on all night. Their good-natured neighbors endured that part of the procedure graciously, but, unfortunately, as it started to vibrate, the machine would somehow propel itself forward until it reached the garage door, where, once it began to bang against the metal, it created a din that was enough to wake the dead! However, when the most interested company was unable to come up with the technology to convert its existing, conventional, crown corks into what he and his brother had registered as the "POP TOP." Tom was pleased to be able to advise that he had already built such a machine...

Nevertheless, although this proved to be an unqualified success, once again history repeated itself. The project was bought out, only to be suppressed – and the name, POP TOP, was purchased from the Warder brothers by a well-known brewing company, for the launch of a new brew – soon to be sold in cans with the recently invented 'pull-tab!'

A tragic end to an amazing life.
On September 3, 1939, Britain declared war on Germany, marking the beginning of World War II in Europe, and by Wednesday 6 September 1939, South Africa, too, had entered the fray. General,later Field Marshall Jan Smuts had been the leader of the opposition, but during an emergency sitting of parliament he defeated the old Boer War General, James Barrie Hertzog, by 84 votes to 67. Hitler, it is said, laughed when he heard that South Africa had declared war on Germany. (Neither his sense of geography nor history could have been very well developed!) Without the Cape sea-lane the Allies would not have held Egypt, the Middle East or India. Probably, and ironically, the Mediterranean would have been lost. Perhaps Russia too, as the Axis swept up from perhaps what was then Persia, through the back door. Pearl Harbour might have been unnecessary for the Japanese if they had taken India, thus —according to experts — there would have been no USA involvement. June 1997.

Despite low numbers, the South African Springboks bundled the Italians out of Abyssinia in months, also thus probably saving Egypt, the Middle East, and India. (The only Allied victory in the opening years of the war.) This enabled O'Connor to drive the Italians out of Libya (only to be chased out in turn by Rommel). For all Hitler’s derision, the South Africans went on to do yeoman work. There were Saffers in the RAF, South Africans in the Royal Navy; even on the county class cruiser which chased the Graff Spee in the River Plate.

There would be many heroes among the forces of every allied country; and no doubt the young Tom Warder, who had been dreaming of glory since he was fourteen years old, hoped that he, too, would be given opportunities to distinguish himself. According to his great-uncle Abinger, the ‘Abinger’ part, had come down through the generations from Sir James Scarlett, first Baron of Abinger, somehow associated with a place near London called ‘Abinger Hammer’; yet, from the moment he was born, he was known as ‘Tom’ (for “Tom Thumb”) because at birth he was small enough to fit into a shoebox.

The ship was already almost bursting at the seams when, just before his nineteenth birthday, he strode up the gangplank in Durban to board the Monarch of Bermuda, the ship about which Sir Dirk Bogarde the British actor and novelist later observed in his book Cleared for Take-off that, “among a good number of 'louts”, were an equal number of “gentler, bewildered men who had been drawn willy-nilly into a world beyond all comprehension”, but for this lad there was nothing 'willy-nilly' about it. Displaying the familiar orange tabs denoting a South African volunteer, kitbag slung over shoulder and carrying a mandolin, Tom Warder was eager and excited to be on the way to rejoining 27 Squadron SAAF ‘Up North’ — as his countrymen referred to the war zone. The Christian writer, Oswald Chambers once remarked that ‘songbirds sing in the dark', and with the mental picture of Bogarde’s ‘steaming hell’ now before one, it seems doubtful that the young Warder played the mandolin for any other reason.

This was indeed the moment he had been waiting for and yet, as he would later confess, there was a tug at his heart that made him, at the same time, reluctant to leave. Less than three weeks earlier, while on embarkation leave, he had walked into a newspaper office and met a girl, a 16-year-old cub reporter. For him it had been love at first sight and, as Charles Magill would be quoted as saying in the October 1995 edition of the Canadian Reader's Digest, as well as in La Tueuse du bronze (Selection (Quebec) and the South African Reader's Digest in November of that year, “dashing in his airforce uniform and extraordinarily handsome, with a deep tan and a magnificent physique, he had caught her eye at once. One day, she had told a co-worker, she would marry this man.”

Trailing behind him as they embarked on that chilly day in 1944, came his brother carrying a kitbag and a guitar. Though older by nearly three years, he was always the one who followed; Tom, the six-foot-something sibling (who had stretched the truth somewhat concerning his age so that they could enlist, one behind the other, on the same day) was the leader. He was the athletic one of whom it was said that he would have swum in the Olympics if the war had not intervened. The one who had spent hours sailing his small sailboat and loved the outdoors.

As has already been said, the brothers had music in their very DNA. They came from a home where someone was always playing some instrument or another. The family had their own, popular dance orchestra, and, since joining the South African Airforce two years previously, the ‘Warder Boys’ had taken their instruments with them everywhere. They had made music wherever they had been stationed, and once a plane had been sent to fetch a piano to complement the squadron’s band. The brothers had made a vow that, even if one of them were to be sick or wounded, nothing would be allowed to separate them. Tom kept that promise assiduously, even refusing promotion until they were home from the front.

If it was trying for every one of 3,000-plus soldiers to be cooped up down below, it was especially claustrophobic to have to sleep, hemmed in with hundreds in the Monarch’s once famous swimming pool. It was bitterly ironic for a world-class swimmer. Without water in the pool, its walls made of it an airless cage. The vessel had cast off from Durban in comparatively cool weather, but, as it crossed the equator and proceeded north, late autumn very soon gave way to stifling summer.

Many became ill from food that ‘went off' because it could not be properly stored. Dodging enemy submarines in unbearable, humid temperatures, the longer-than-normal voyage seemed endless. So, following in the tradition set by Irving Berlin’s troupe, and the many other musicians who had been on board the Monarch when it was dubbed the ‘SHOWBOAT’, those who could, now played music. (In May 1947, two months before the birth of Tom’s first child, word went out that the Monarch had been destroyed by fire at Hebburn-on-Tyne while being reconditioned for its return to passenger service.)

Like their grandparents, the grandchildren, award-winner singer-actress Melissa van der Schyff, and her brother, Dylan van der Schyff, an internationally acclaimed percussionist who makes his home in Vancouver, also have music in their genes. In song Melissa recalls the stories she and her brother have known for as long as they can remember; stories that fascinated them as completely as they had gripped their mother and uncle when they were young. She relives happy times with a gentle man who had come to join them in Canada because he loved them as much as they loved him. Not for them any mundane nursery rhyme. Again and again they clamoured to hear, ‘the one about The Monarch of Bermuda.’ He never told them about the misery, about the rotten, hard-boiled eggs that had turned green, or how some of the men were dead before they reached their destination. Only the funny parts. About how he and his brother gave a concert one night and blew all the lights on the ship with their cranked up sound equipment; about the pandemonium that ensued and about how everyone was terrified, thinking they had been torpedoed.

Saying nothing about the vicissitudes of war, he told them about how he had swum in the Mediterranean off the coast of Oran, but not, until they were older, about how he and a friend had brought the body of an American soldier ashore. He sang the songs that he and his brother had sung on the ship, and played the tunes they had played in the squadron band — named The Venturians because they flew ‘Venturas’. His youthful listeners thrilled to hear about how he had once or twice had a chance to play with some famous musicians including Tommy Dorsey and Glenn Miller; but he was never able to talk much about how pilots, returning from anti-submarine reconnaissance to the hopelessly too short emergency airstrip at Kalafrana in Malta, on occasion misjudged the distance to the precipice at the edge of the towering cliffs.

The Warder Boys came home from the war in Europe, having signed up for further service in Burma; Tom to court his girl while they waited to be shipped out to the Far East. Fortuitously, before the order came for them to leave, peace returned to their world on V J Day. Tom joined a commercial airline, married and settled down to raise a family, remaining fiercely proud of his squadron. After emigrating from South Africa in 1978, he joined the Royal Canadian Legion and became a member of the Army Navy and Airforce Veterans’ Association, retaining life membership of the South African Airforce Association. He gave his time, his energy and his money passionately, however, to help his wife establish an organization which has saved millions of lives in Canada and around the world by creating awareness of the most common genetic disorder of all: ‘Hemochromatosis’.

He has been described by physicians and patients alike as the ‘most courageous man’ they have ever known. When, with dreadful suddenness, that same genetic disorder caught up with him and he learnt that he was dying, he was faced with two almost overwhelming problems … He might not have time to write 'The Story of the Monarch', as he had promised the children; and the kind of money which a funeral might entail, was frozen in South Africa. Desperately he turned to the Canadian Legion and was advised to apply to Veterans Affairs in Vancouver, which he did — one cold rainy afternoon in April 1992. He stood patiently, dripping wet, until his turn came to state his case to the clerk behind the counter.

“I’m sorry,” said the young man, politely but firmly, shaking his head. “South Africa was never in the war!

But, sick as he was, Tom Warder did not give up readily. His immediate need was great, but what was more important, his pride had been stung. He tried repeatedly to have his medals, discharge papers and other records of active service recognized. They were deemed to be inadequate, however, on the grounds that, although the month and the year were given, the exact dates of arrival and departure from war zones — for example, South West Africa (now Namibia), Oran and Malta — were not specified. Six weeks after his first visit to Veterans’ Affairs in Vancouver, in a greatly weakened state but determined to have his evidence validated, he managed, by utilizing his airline privileges, to make it back to South Africa. He followed up correspondence, sent ahead by him from Canada, with a personal visit to the records office in Pretoria. From there the necessary documentation was mailed to Canada, but he did not live long enough to know the outcome. He died in South Africa on July 9, 1992. Relevant documents were recently found among his personal papers—too late for his case to be resolved. One official document shows that his records had indeed been received; however, after 18 years his Canadian file is still marked ‘PENDING’.

A reference to 27 Squadron SAAF is found in the book With no remorse…! but it is difficult to establish whether this batch of South Africans comprised a different squadron or were a belatedly-arrived part of the one already stationed on the island. Records include mention of their “rejoining” a unit" - but that could have meant that they had already met up again in North Africa with the one with which they had formerly served; however it is most likely that they were linked to the RAF. What is indeed known is that they had “sub hunted ” along the Southern shores of South Africa from their base at Fisantekraal in the Cape, after having been on anti-submarine patrol along the Atlantic Coast from Rooikop in South West Africa (now Namibia.) They talked with pride about an O.C. called Thuys Uys whom they had known there and of whom a great deal was heard in connection with the daring rescue of the more than 100 passengers and crew of the British passenger liner, Dunedin Star, off Skeleton Coast - one of the most frightening places on earth for a ship to be wrecked, and certainly the most barren.

[The DUNEDIN STAR, ran aground at the Skeleton Coast of then South West Africa in 1942.
When the call for aid came from the helpless men, women and children, marooned on the desert beach, the men of the South African Naval Forces, the Air Forces, the Army and Police and the Administration for Railways and Harbours and even the Royal Navy got together to organize this amazing rescue operation.]

Finally embarking on the Monarch of Bermuda for the North African war, zone, they had no sooner set sail for Alexandria, from Durban, before the sea voyage turned into a nightmare that would last three months before they reached their destination. As already been said, by the time they arrived in Egypt, having zigzagged all the way up the east coast to avoid torpedoes, a number of their companions, had died.

About The Monarch of Bermuda: Some of the most graphic descriptions of what conditions were like on such a troopship are those provided by Dirk Bogarde. He tells that he returned to “home and beauty” on the Monarch of Bermuda and that the “Evening Express" announced their arrival in the United Kingdom, all 2600 of them, as “the largest batch for “demob” in one ship”. Bearing in mind that the vessel had been built to carry 1286, his wry observation that “it was a tight squeeze,” is a fine example of British understatement.

He had left England on the hastily converted Carthage into which, he says, “hundreds and hundreds of us were forced like dates in a box, side by side and just as sticky!” The war in Europe was over by the time he left for Bombay to pursue the war against Japan; but there seems to have been no decrease in the numbers aboard. Even though he was an officer, he was assigned and obliged to share, for two months and with seven others, a cabin designed for two and having only one outside porthole. When various duties obliged him to descend to the “steaming hell” of the lower decks, his quarters must have seemed like the Ritz by contrast. In “Cleared for Take-off”, the last volume in his autobiographical series, his description of the scene down below is graphic … "There, ranged in swinging hammocks, in almost constant darkness, the OR’s or other ranks were forced to spend the time. The smell there was dreadful,” he goes on to say, “of unwashed bodies and feet, of farts and vomit.” According to him, there was nothing for anyone to do, apart from a few daily duties, and rest periods were “agonizingly painful, lonely and long.”

From a different perspective, some almost unbelievable yet true accounts paint a ghastly picture of what internees had to endure in the lower parts of the Monarch while being transported from Britain to other parts of the Empire. Their stories are appalling enough, but it seems completely inconceivable that Allied troops, risking their lives for what they believed would make the world a better place, should have been subjected to such unendurable hardship on troopships before they even reached the battlefront. There were those for whom the ordeal would come to an end with disembarkation in a war zone, only to be repeated on their way home. “Some servicemen and women would go home maimed or blind – and some not at all,” is the opinion voiced by Marie Warder, the author of With no remorse… " but I still cannot reconcile myself to the fact that there were others for whom their outward journey would remain the worst memory of their war-time experience."

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://

AUGUST 1992.


Hemochromatosis -- ten times more common than other well-known genetic diseases such as Cystic Fibrosis -- is the only inherited disorder of which the complications, which include diabetes, arthritis, cirrhosis of the liver, and a host of other involvements, are preventable by early diagnosis and treatment. Untreated it is fatal. In Tom Warder's case, diagnosis came too late, but, because of him, many people around the world (and their families) will live.

Contributed by Marie Warder
May 31, 2009
This day, of  this year, was supposed to be my day for finally "letting go" of Hemochromatosis. I was basking in a rosy glow of satisfaction on account of the fact that seven of my books had just become eBooks on both Mobipocket and Kindle (a feature some of my correspondents are evidently very pleased to discover, for it is easier to search through an electronic book with an index.) The very next day, I determined, I would begin work on my final Hemochromatosis article for an excellent online magazine which has provided me the privilege of writing a series on the subject.

"Thank You, Meidjie!"

As I sat on the edge of my bed before going to sleep that night, a wave of remembrance seemed to sweep over me. It suddenly hit me that it was 76 years, to the day, since my father had collapsed on the golf course, never to recover… I relived the sounds I heard in the house when I came in from running in the school sports; saw my shattered, sixteen-year-old sister as she looked that day, and then I remembered handing my father a glass of water, three months later, on the day he died. Although I was very little, I had been left to sit with him in the afternoon because everyone else was so tired, and I remembered the way he said, "Thank you, Meidjie!" (Little maid. - A Dutch or Afrikaans term of endearment.)

I also clearly remembereded  how blue his eyes were — and how dark his face! Surely as dark as that of Black Jack Bouvier, the father of Jackie Kennedy Onassis, about whom I had written in one of my recent articles! [John Vernou Bouvier III (May 19, 1891, Easthampton, New York – August 3, 1957, New York City, New York) was an American socialite and Wall Street stockbroker. He was the father of former First Lady Jacqueline Kennedy Onassis and Princess Lee Radziwill. His nickname "Black Jack", referred to his omnipresent dark tan, arousing speculation because one of the presenting symptoms of Hémochromatose is described a “the tan that does not fade”.]

A picture in which my father is shown with a group of soldiers during WWI made a great deal clear to me. All of a sudden, as I saw again those wonderful blue, blue eyes in that bronzed face, I knew what had killed him, at the age of 46....Hemochromatosis!

Perhaps it was because I knew that, among the Huguenot population of the Western Cape Province of South Africa, the carrier rate for the disorder was one of the highest in the world, I had always assumed that the gene I had passed on to my descendants was that brought to the country by ancestors who arrived there in 1688, having miraculously escaped another holocaust: the massacre of Huguenots throughout France, and burning at the stake in Laguedoc. Now I know that I was wrong. The gene my father passed on to me was Dutch!


Relationship Among Listeriosis, Salmonella, E. Coli, and Iron

Sounding the alarm for a potentially lethal combination.

About Hemochromatosis (a.k.a, Iron Overload)

What you don't know about Hemochromatosis could kill someone you love-- perhaps even you.

With Hemochromatosis

Because protecting families with Hemochromatosis - not the ridiculous disease portrayed in HOUSE - has become my life's work, my motto, coined for the Canadian and South African Hemochromatosis Societies is: "Find us one person and we have hope of saving a family."

Now here we are in December of 2008, in Canada, where we're still weathering a Salmonella situation - at the tail-end of a Listeriosis outbreak - not too very long after an E-coli problem with drinking water in a place called Walkerton, caused the death of some of the town's citizens - and I do believe the omission of 'persons with iron overload' on 'official', published lists of 'those most at risk', to have been a gross oversight.

That being said, although I miss South Africa - the South Africa of my youth, where Jan Smuts Airport was still Jan Smuts, and no place was called Mapumulanga; the South Africa to which my ancestors fled from France on the BERG CHINA, via Rotterdam, on 20 March 1688, to arrive at Table Bay, on the 4th of August that year - I consider myself blesed to be living now, in what is surely the cleanest and best-governed country in the world. I am further blessed to reside in what I insist is the prettiest, safest and friendliest little town in all of Canada, with the ocean on three sides of me.

So, how can Hemochromatosis possibly enter into this picture?

A crippling condition which causes the body to store dangerous accumulations of iron, Hemochromatosis is now acknowledged to be the most common genetic or inherited disorder, and, in itself, can be fatal if left untreated, no matter where one lives..

If, as the experts tell us, iron is an essential growth factor for the multiplication of most bacteria, viruses, and even some cancers, it explains why the people I personally know of, who were afflicted with Listeriosis from eating unpasteurized soft cheeses like Camembert, were hemochromatotic; as was one who nearly lost his hand because of Pasteurella from a cat bite.

In a 1986 issue of “Among Ourselves”, as the newsletter of the Canadian Hemochromatosis Society was then known, we printed the following:
“Warnings have been issued in a number of medical journal articles, including one in the April 1985 FDA Drug Bulletin, to patients with chronic liver diseases (including hemochromatosis) not to eat raw clams or oysters, and undercooked seafood, and — in the event of open wounds — to avoid bathing in salt water because of the danger of a virulent Vibrio bacteria (Vibrio Vulnificus). Treatment with tetracycline is specific.

In a letter to the editor of JAMA, June 19, 1987-Vol 257, no 23, the writers, Claudio Chiesa MD, Lucia Pacifico MD, Francesco Renzulli MD, and Mario Midulla, MD, of La Sapienza University of Rome, and Laura Garlaschi MD, of the University of Milan, reported: "From 1978 to 1986, in Italy, almost all cases of severe clinical disease due to Yersinia enterocolitica septicemia, developed in subjects with iron overload." (To me that spells 'Hemochromatosis'!). Therefore, when confronted with this unusual problem, the diagnosis of hemochromatosis should be entertained."

It is my personal contention that, in situations like the Walkerton E-coli outbreak, and the developing Salmonella problem, Hemochromatotics should always be considered to be at great risk. In fact, iron stores - particularly the Transferrin Saturation Percentage - should be monitored in all afflicted individuals. Not only would this be good for the patient (as, for example, in the case of cancer or HepC patients, before treatment with Interferon), but it would provide researchers with an invaluable opportunity for research.

* * * * * * * *

Contributed by Elaine Murray
Hemochromatosis. — There was a time when nine out of ten people had never heard of it and physicians considered it to be "too rare to be of concern”. It is now known to be the most common genetic disorder of all, and Marie Warder has played no small part in, as she puts it, 'bringing the research that was mouldering on the shelves or in the filing cabinets, into the light of day.' She found out first-hand what a devastating disease it could be when her husband became sick. For six years, she watched as his eyesight deteriorated, his personality changed and he grew sicker. Finally, a doctor diagnosed the problem: an overload of iron in his body. Luckily, it was caught in time and he was bled a gallon of blood per month to save his life. In The Bronze Killer, Warder provides much needed information about this common enemy, from recognizing its symptoms to stressing the importance of early detection and treatment. Recommended by physicians in many hospitals and clinics around the world, this book also includes a layman’s reference on the disease, Iron…The Other Side of the Story!

On the Internet I saw The Bronze Killer recently described as the 'definitive book about Haemochromatosis', and I agree. The reviewer was right—but, to me, it is more than a layman's reference to a genetic disorder. It is a consummate love story. Love at first sight...the enduring adoration of a teenager for a young man—adoration which would lead her, in time, along a thorny path and, against all odds, to a fight against ignorance of a disease. That fight has culminated in the saving of hundreds of thousands of lives around the world.

From the Back Cover
Ø WHO SHOULD BE TESTED? — Anyone who suffers from:
Ø DIABETES (sudden-, late-, maturity- onset)
Ø Also frequently misdiagnosed as chronic hepatitis, gall bladder and thyroid problems, gout, rheumatoid arthritis, polycythemia and iron deficiency. As some sufferers exhibit pronounced mood swings and other personality changes such as severe depression, anger, confusion or diminished memory, they can be incorrectly treated for mental illness. In some cases Alzheimer’s has been suspected.


Both The Bronze Killer and the recently released booklet of essays published in 2009, are now available as eBooks - as are all the novels in the "Stories from South Africa" series.)

Some of the reviews
Former Director-General of Genetic Services in South Africa
"We are highly impressed by the evidence you have collected and summarised..."

HH patient: Quoted in the Canadian Reader's Digest:"She deserves the Order of Canada"

A reader from Canada. "This book could save your life.
While visiting in Britain, I borrowed this book from a friend who had, in turn, borrowed it from the Haemochromatosis Society in Barnett, and as I read it, more and more symptoms described in it seemed terrifyingly close to what has been plaguing my brother for years. I persuaded him to take the information to his doctor, as a result of which he was diagnosed and now all our members of our family have been tested. We are so grateful! The book is well written and tremendously absorbing, but its main value lies in the fact that it saves lives. We are now reading the new edition and sincerely recommend it."

David of Harpenden,UK: The most compulsive read I have ever encountered. Could not put it down and read it from cover to cover!

Toronto Star: A valuable and highly recommended resource.

Nancy Steinbeck (widow of John Steinbeck, daughter-in law of the famous writer and author of "The other side of Eden/"
"Thanks to them, this disease will never mutely effect and confound patients and their families as it has in the past."

"If more people know about it, more people will live!" – Marie Warder in Maclean’s, October 6, 1986

Pat Ridgway of St. John, New Brunswick says, "I must say the book is so informative, it was like looking in the mirror. I am going to pass it on to others to read."

Glenn Paige, Tucson Arizona, Internet, March 1999. "Glad I read it!.…Not even in the best of medical journals, not even on the Internet have I found the answers to so many niggly little details…. to the small, intimate things I was too embarrassed to ask my doctor about…. She makes the difficult things easier to understand.".

Anonymous: - "Men – before you reach for the Viagra, please read this book. It could save your life! I had no idea that sexual dysfunction could be the result of iron overload or that it was such a common symptom of a potentially fatal and very common disease…..I know now why I have developed diabetes and have arthritis in my hands!"

Now with footnotes and editors'postcript.
A valuable resource still in demand after nearly 20 years.
Recommended by physicians and hospitals in Canada and elsewhere.
Earned high praise for its author in her 1992 citation for the prestigious Canada Volunteer Medal of Honour and Certificate of Honour.
About Hemochromatosis (a.k.a, Iron Overload)
More about Hemochromatosis

About the Author
Marie Warder, who, before writing her books on hemochromatosis, was already the author of fourteen published novels, is the founder and President Emeritus of both the Canadian Hemochromatosis Society and the Hemochromatosis Society of South Africa. She is also the founder of the International Association of Hemochromatosis Society of which she was, for many years, the President. As such, she has assisted in the establishment of affiliated societies in several countries. Internet.

"Glory to God whose power, working in us, can do infinitely more than we can ask or imagine: Glory to God from generation to generation in the Church, and in Christ Jesus for ever and ever."
-- Ephesians: 3:20-21

Read more about Hemochromatosis online:

To hear more about Hemochromatosis:

About the DVD

– Introducing and Promoting Awareness of Hemochromatosis 1980-1997
{Please forgive the frequent use of the “ferro-stat” analogy. Even the acclaimed Laurie Powell of Australia would say, at the first BioIron conference, that in Hemochromatosis, the “gut behaves as though it is ‘iron-deficient.’”}

As people watch it (if and when they do) they will probably notice that it is virtually an illustration of Part Two of The Bronze Killer. Please bear in mind that it is not by any means a ‘professional’ DVD, although it has been painstakingly put together, by a professional, from segments of several recently discovered, very poor, substandard VHS tapes, recorded in no particular sequence and at ‘Extended play’ speed, which, in reducing it three-fold, contributed to very poor quality. (Woman-like, I point out that my beloved Tom did not have a bottom, front tooth missing!)

By watching those tapes, over and over, and enhancing them, Dave Sandelands has managed to produce a DVD that means a great deal to me. As none of the segments was dated, it was only as he familiarized himself with them, that he was able to establish what is more or less a correct sequence, and, upon reading the label, it will be noticed that, in one case, a recording done in 1997 comes before one of a later date. As they bore no captions, he could, at first, only indicate changes of date or venue by leaving a small space between each new track; however details have since been added to the best of our ability, and I am indebted to him for his dedication to the task and for contributing in this way to the CHS archives. I also owe a debt of thanks to Roger Clark, who converted both the DVD and a VHS tape recorded during an interview with the SABC, into the videos which have since been posted on YouTube. Both videos can also be seen on the Bronze Killer page of the website

How little we all knew in those days! … How much we were yet to learn (and still do!) Please bear in mind that the gene had not yet been mapped and that what will be seen is the FIRST EVER mention of Hemochromatosis on Television — anywhere. Richie Nay’s phlebotomy was the FIRST ever seen on television. (Less than five years later, Tom and I would be at the UBC hospital with Richie as he waited to be told about the massive hepatoma he had developed, and that he was dying!)

To me, EVE SAVORY’S CBC contribution is a precious souvenir of the very last time Tom and I would make music together. The selection of that tune was mutual!

CHS members might recognize, at some stage or another, some of the now well-known physicians who became so important to us. In the segment about the man who admits, while undergoing a phlebotomy, that he has “dodged a bullet”, be on the lookout for a very young Doctor Sam Krikler who would become especially important to us all, and remains so to this day … At the meeting held in the lounge of St. David’s Church, Tsawwassen, there is a brief shot of the CHS Board members of the day, which included people like Eugene and Del Boyko.

Update: The DVD can now be seen as a video on YouTube under the heading of Hemochromatosis Awareness. or by cicking onto a link on the Bronze Killer page of the Dromedaris Books website.(Link provided to the left of the heading of this blog.