THE SOUTH AFRICAN/CANADIAN WHO MADE THE WORLD
AWARE OF
HAEMOCHROMATOSIS
TAGGED
‘CRACKPOT’ NOW CALLED
‘SAINT’
Some
years ago, a
prominent
South
African researcher wrote about a book with the strange title of “The
Bronze Killer”—in which the writer, Marie Warder,
described her husband’s horrific battle with a disease far too long
considered rare—that it was ‘the story of a remarkable man and an
extraordinary relationship’. … To me it is more than just about
a disease!
On the Internet I saw
this book
recently described asthe
'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.
As far as I am
concerned, it
is due to
her heroic efforts that Haemochromatosis is now recognized as the
world’s most common genetic disorder and, bearing this in mind,
ever since I heard about the launch of the Cape Town branch of the
Haemochromatosis Society of South Africa—in the Christiaan Barnard
auditorium—earlier this year, and the society’s participation in
the Genetics conference held in Somerset West, I have wondered how
someone, so far away in Canada, feels about having to live through
these—to her, momentous happenings—vicariously.
My thoughts go to a
newspaper headline
quoted by Charles Magill in his story about Marie Warder, in the
‘Reader’s Digest’, where he wrote“As
more and more physicians and researchers ‘do the talking these
days, and invite me to participate out of courtesy or kindness’,
Canada’s Iron Lady must surely feel vindicated.”
“Once
called crackpot—now called saint…” reads the
headline
of an article in the “Victoria Times Colonist”—but, Magill goes
on to write, “She says she can’t help wishing that
Haemochromatosis had been taken seriously long ago. She cannot help
‘mourning the ones who have suffered and died unnecessarily’ in
the meantime!”
Charles
Magill concludes his
article
by quoting Dr. Malcolm Brigden: “Marie has built an international
organization, and tirelessly disseminated information about the
disease,” he says. “To me, she’s an authentic Canadian hero.”
Former
filmmaker, Eugene
Boyko, went
further. “The doctor I was going to was in a total quandary until
Marie alerted us to the disease. Because of her and the treatment I
have had, I have gained an extra ten or twenty years.”
And Magill,
himself observes:
“Hundreds, perhaps thousands, of Haemochromatosis victims who have
been diagnosed or helped, thanks to Marie Warder’s tireless crusade
would say ‘amen’ to that.”
“ Not
because of
me,” she protests, shaking her head. “With God’s
help,
because of Tom!”
Elaine
Murray
THE
HAEMOCHROMATOSIS SOCIETY OF SOUTH AFRICA
(HSSA)
In
1987
Marie was
interviewed by Toni Younghusband of the Johannesburg “Star”,
which led to a story in “Personality”. Shortly after that, during
a prolonged stay with her brother-in-law and 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 South 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”. In 1997, Ten years
later, to the day, she addressed the same National Council of Women
group, in Beaconsfield.
As far as
the
Haemochromatosis Society
of South Africa was concerned, the time that Tom and Marie Warder
spent in South Africa at that time, 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 Haemochromatosis 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
“Sunday Times.”
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 Haemochromatosis) as well as the
prominently placed story of a woman who had undergone premature
menopause in her early thirties because of Haemochromatosis. 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 the new mother, 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 of both the press and the public.
For a while
after Tom’s
death, in
South Africa in 1992, she wanted nothing to do with Haemochromatosis,
but when in 1993 she was invited to the first World Health
Organization meeting on “The Prevention and Control of
Haemochromatosis”, she accepted the invitation, and was very soon
back on the campaign trail once more. Now, after devoting the best
part of her life to Haemochromatosis, she is back to doing what she
likes best. … Playing the piano and writing stories. … However,
although she says that she has ‘let go of Haemochromatosis’, it
will not let go of her. The phone still rings, and desperate people
still call or write. …The tail still wags the dog.
In 2006, she marked the
North American
release of her 20th book, “Dominic
Verwey—Samaritan of
the Sahara”, and her ardent hope is that all her works will some
day be available in South Africa, the country of her birth, and that
physicians everywhere, will readily recognize the symptoms of the
world’s most common genetic disorder.
“Find us one person,
and we
have hope of saving a family,” is the motto of the
societies she has founded.
Elaine
Murray
THE BOOK
THAT GAVE A
DISEASE A NEW NAME, evolved from 'Iron...the
other side of the story!' (1984) which was the first book
ever to
be
written on the subject of Hemochromatosis—iron overload. Please note
alternative spelling, outside of North America, where the disorder is
known as 'Haemochromatosis'.
Marie
Warder's books are now
available for immediate download in eBook format from Mobipocket.com
and from Amazon.com for the Kindle version. Click
here to download a Marie Warder eBook
The following 56-minute video provides a pictorial
background
to events described in the The Bronze Killer, and introduces
people who played a key role in those events. It consists of a playlist
made up of 6 parts, so that it is easy to navigate to subsequent
segments, without having to go back to the beginning every time it is
watched.
The
Inside Story, hosted by Michelle Boden, is recognized as Canada’s
leading radio documentary series. Broadcast on 630 CHED—Edmonton’s
News, Talk and Sports radio station—and winner of numerous regional and
national awards, the Inside Story documentaries range from the
serious to the whimsical and everything
in-between.
Episode 14:
Hemochromatosis—The deadliest disease you never heard of.
