Monday, March 1, 2010

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 H√©mochromatose 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!


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