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”).
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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!
Article comments
1 - 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."
2 - 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, www.dromedarisbooks.com
3 - 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!
4 - 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.
5 - 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...
6 - 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.
7 - 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.