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The Horror of Hemochromatosis

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In 1984, four years after I had established the Canadian Hemochromatosis Society, I found myself in desperate need of funds to keep the burgeoning society going, and decided to write a booklet based (with permission) on the real-life stories that had been shared with me, and including the fruits of my in-depth research to that date. Membership fees had been set at one dollar, but my members proved only too willing to send me a donation of five dollars toward the cost of photocopying the proposed publication, and to provide each of them with their own copy, the title of which would be “Iron: The Other Side of the Story!” Volunteers offered to try and sell further copies to bookstores and pharmacies, and so it became the first book in history to be devoted entirely to the subject of hemochromatosis.

Esophageal Varices: One Possible Outcome That No Euphemism Can Minimize

In “Iron: The Other Side of the Story!” I attempted to point out the danger of delayed diagnosis, and listed such complications as I deemed necessary to enable — and motivate — the average reader to seek medical advice. However, when I sent a pre-print of the booklet to my hero, the late Professor Leslie Valberg of the University of Western Ontario, for his criticism, I confessed that I had tried to focus on the optimistic. There were some aspects of iron overload which I found so dreadful that I could not bring myself to make any reference to them. Perhaps it was because of my husband and daughter and the possibility of frightening them that I could not do so. “I didn’t want to make it too scary,” I admitted, and now I wonder whether I misconstrued his reply:  “You don’t have to make it scary — it’s scary enough!”

A week after the publication of an article on hemochromatosis in the October 27 l986 edition of the Canadian magazine, Maclean’s, a Toronto woman whose friend had succumbed to hemochromatosis the previous year wrote, in a letter to the editor, that the article had been informative but had not adequately described the “intense suffering experienced by victims of this terrible disease.” In another paragraph she referred to it as a “truly dreadful disease.” I agreed wholeheartedly but still could never bring myself to tell it as it was, for fear of terrifying anyone who was already afflicted; always hoping against hope that every person I dealt with would be among the fortunate — the ones who were diagnosed before his or her condition was hopeless. Perhaps if I had painted the true Dorian Grey, the media might have been provoked earlier into helping me.

One possible involvement I had steered clear of was that of esophageal varices or enlarged veins in the throat. To me this was just too horrible to contemplate. I now consider that I erred in this omission from my booklet, for I now believe that to have shrunk from all mention of this complication was sheer cowardice. Could this have been simply another manifestation of my never-failing inclination towards euphemism? Since the time when one of my earliest correspondents had described to me her husband’s death as the result of a massive hemorrhage, I had added to my files several accounts that were similar. If I had written about them, I might have done much good.

In general the word “varices” refers to distended veins (from "varix," a word derived from the Latin word for “twisted”).

House, The TV Series

Followers of Dr. House, the irascible physician portrayed by Hugh Laurie in the popular TV series, have by now become inured to the ghastly sight of individuals with blood spewing from them, or having it gush from the throat of every second patient, but this is now… and then was then! That I had perhaps erred in trying to “break the news gently” first became painfully clear to me when an elegantly dressed woman came by the table at which my husband and I were sitting in Vancouver’s Oakridge Shopping Centre, where we were distributing leaflets on May 28, 1987, the third day of Canada’s first Hemochromatosis Awareness Week.

She stopped to talk for a while and surprised us by actually knowing about hemochromatosis. Moreover, having been made aware of the disorder by the death of her husband’s father, she had bought my booklet. She cheerfully informed us that no one else in the family was afflicted or even at risk. They were all fine, except her husband who was very ill. He had unfortunately just been hospitalized because of enlarged veins in the throat, due, it was suspected, to medication which had been administered to him some years previously. Neither she nor her husband had ever thought to mention to the doctor in charge of her husband’s case that there was a family history of hemochromatosis.

The next most horrifying detail she shared with us was that a relative had been “given” hemochromatosis by the Japanese in a prisoner-of-war camp, and kept spitting blood!

What Does This Have To Do With The Subject?

There was a time when diabetes was considered to be the most common cause of death among hemochromatotics, but since the discovery of insulin by Banting and Best, a liver tumour known as a “hepatoma” tops the list. Whatever the cause, serious liver diseases such as cirrhosis can cause a number of complications, including esophageal varices. Abnormally enlarged veins in the lower part of the esophagus can occur in 50% of patients with cirrhosis. It is when the root cause happens to be iron overload — as is the case with a dear and valued friend, at this moment — that I cannot help waving the banner once more! A fervent teetotaller, he has abstained from alcohol throughout his adult life, but what else is new? The initial pronouncement after diagnosis of liver cirrhosis, was “cause of varices: alcoholism”!

Signs of Hemochromatosis, The Insidious Killer

Diabetes, arthritis, a tan which never fades (even where the 'sun don't shine!'), chronic fatigue, abdominal pain, impotence, diminished libido, premature menopause, arrhythmia, cirrhosis of the liver — all can be the result of too much iron.

Hemochromatosis is also frequently misdiagnosed as chronic hepatitis, gall bladder and thyroid problems, 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.

Only the correct tests will provide proof. A complete "iron study" to obtain the transferrin saturation percentage as well as the ferritin level is necessary, for hemoglobin is normal in hemochromatosis. If you have any of the above symptoms and your physician will not test you, find one who will. No one needs to suffer the ravages of hemochromatosis. While it is the most common genetic disease of all, it is the only one which is treatable, and also the only one of which all the suffering is preventable.

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About Marie Warder

Born in South Africa, became a journalist and later trained as a teacher before establishing my own school - "Windsor House Academy, of which I remained the principal until I emigrated to Canada. Love to write, and have published 27 books. Played the piano in my husband's dance band for 33years. Founder and President Emerita of the the Canadian, South African and in International Association of Hemochromatosis Societies, http://en.wikipedia.org/wiki/Marie_Warder
  • Openmouthed Len

    I am so glad that I read this article which, in turn, led me to read The Bronze Killer. Like the man featured in the YouTube video (HEMOCHROMATOSIS AWARENESS -Marie Warder) I feel that I, too, have “dodged a bullet.”

  • Marie Warder

    I am re-posting a link to this article on Facebook because of messages since received from affected people who despair of dear ones who refuse to go for testing. The person featured in it has since died, and I am hoping to be well enough to go to his funeral today. If I can be there, and if have an opportunity to speak, what I would say would be that David Fleming was a gift. One of the nicest, most courageous, unselfish and exemplary men I have been blessed to know. Only his unshakeable faith kept him going. He is featured in Part 5 (A and B) of the YouTube video HEMOCHROMATOSIS AWARENESS to be found on the BRONZE KILLER page of my website, http://www.dromedarisbooks.com

  • Marie Warder

    For some unknown reason, the YouTube video I have mentioned in this article, has been removed from the “Bronze Killer” page of my website. I would be grateful beyond words,to anyone who is able to explain why – and even more so to the person who can restore it!

  • Tommy Webb JR

    I have had Hemochromatosis since 1992. I had problems with blood pressure,chronic headaches, Back surgerys and Glaucoma with High IOP.Severve fatigued with abdominal pain with cirrhous of the liver. Took around 18 months to get my iron level down to normal range. 3 times a week phlebotomys for a year and a half. Now about 2-4 phlebotomys a year. Why do I stay so fatigued with pain in joints feet and back.

  • Marie Warder

    I am not a doctor so I shall not attempt to give you a diagnosis re the fatigue etc., but, just taking a guess, I think that the pain in your joints, feet and back, might be due to chondrocalcinosis…

  • cheryl crain

    my husband died in 2010 of this disease we never were told that he had hemochromatosis when he almost died of diabetes the previous year. i wish that we had been informed of the diease, so that we could have gone to a hemotologist. maybe he could have lived a few years longer. we never had that option. now my children and grand children are without a grandfather. now my life is so uncertain finances are terrible. it is so unfair, that we never had a chance to at least fight back. one thing for certain is this a horrible disease and my children are affected. they are carriers of the same disease. i live in fear knowing the horrible suffering that a person is going through. i hope that my children never have to endure that kind of suffering. my husband was 57 when he died. he had always been in good health, but in october of 2009 he started feeling bad. we went to our family practioner and was told he needed gall bladder surgery. within a matter of 6 weeks. cancer was everywhere plus he lost his voice. seven weeks later he died. thanks for letting me have a voice in this matter, because it has been a terrible burden.

  • Marie Warder

    You are almost telling my own story and, because of this, there can be few people who can be as sympathetic as I am.
    There is a ray of hope, though. Now that you know what you are up against,your children will be fine as long as their iron stores are monitored.
    Mine have regular phlebotomies in order prevent that dangerous build-up of iron in their bodies.

  • Alpha One Killer

    Burst varices are scary. I was not told about them when diagnosed with Alpha One [I was also told I had borderline haemochromatosis]. I found the subsequent bleed more traumatic than a later liver transplant. Anyway, I finally got round to composing a blog post on the subject, which may possibly help those who are anxious about what to expect. My advice would be….DON’T PANIC.