Hemochromatosis: Ever on the Lookout for Signs

This entry marks part four in a series on Hemochromatosis.

When friends and family shake their heads apologetically and tell people that I have "iron on the brain," they’re quite right, but fortunately the expression is a metaphor and should not be taken literally. I admit that I stare at people — on buses, in the line-up at the supermarket, where I also sometimes catch myself surreptitiously examining the cashier’s hands — everywhere! Wherever else I am given an opportunity to do so, I can’t resist studying hands, the texture of hair, and men with hairless arms and legs. Anyone who is of concern! In the days of Jane Austen and the like, smitten young damsels often resorted to dropping a handkerchief in a strategic place, hoping that the targeted swain would pick it up and return it, thus initiating a conversation. I don’t drop hankies. I drop hemochromatosis pamphlets.

Over the years I have seen too many misdiagnoses and wept with too many victims of delayed intervention to give up now. After all, Hemochromatosis — iron overload — is not a disease until it is allowed to become one, and all the dreadful involvements of this, most common of all genetic disorders, are preventable by early diagnosis and treatment.

It was sheer torture when I worked as a chaplain at a hospital and, standing at the bedside of a patient who had become totally resistant to insulin, would notice the skin colour and the typical knuckles of “bronze diabetes,” while prohibited by protocol from saying or doing anything about it. Equally heartbreaking to me now is the fact that, even when blood and genetic tests have provided proof of someone’s condition, first-degree relatives are not always informed of the fact that they could possibly be a risk. (By the way, not everyone develops "the tan that does not fade," and redheaded people can often seem to be paler than normal.)

Sometimes It's Impossible to Keep My Mouth Shut

I clearly recall two occasions on which I could not refrain from speaking out. One was when, before I could stop myself, I asked a young lawyer why his fingernail nails were such a funny shape — flat, perhaps to the extent of being spoon-shaped. He has been on phlebotomy therapy (blood-letting to rid his body of excess iron) for three years now, and his wife is delighted that his violent mood swings are a thing of the past.

The other time was when, in South Africa, I went with a friend to visit his brother in a psychiatric hospital, and, leaving them to visit alone for a time, I wandered out into a hallway where a deeply tanned, very obviously dejected young man sat sprawled in a chair, with his chin almost down to his chest. I found a seat beside him and, after a prolonged silence, he suddenly began to speak to me, pouring out a tale of woe as if he had been waiting a long time for someone who might be willing to listen. He had been having shock treatment among other things, he confided. He was diabetic and had some problems with an irregular heartbeat.

Article Author: Marie Warder

Born in Ficksburg, South Africa, trained to be a journalist, fell in love - for keeps - at 16, married at 19, wrote novels, played the piano in my husband's dance band for 35 years, had two children, studied to be a teacher, started my own school and …

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