It is possible that readers following my series on hemochromatosis may have seen these images before. The wording below the first one is clear enough, but unfortunately the text attached to the other is too small for the words "where the sun don't shine" to be discernible. As for “problems below the belt?" Hard as it might be to believe in these days of ‘plain speak’, in the early 1980s even hardened reporters could not bring themselves to come out blatantly with a phrase like “sexual dysfunction”. I know I couldn’t.
In the early days of my campaign to promote awareness of hemochromatosis — the most common inherited disease of all — I would waffle and resort to all manner of euphemisms to get my message across when interviewed on television. Now, having had many years of listening to desperate people, reading their letters, and fighting against ignorance and misdiagnosis, I am sufficiently hardened to talk bluntly about the tragedy of impotence and loss of libido
In every corner of North America (and around the world) there are men who are secretly terrified because incidents which seem to threaten the very essence of their maleness are becoming the rule rather than the exception. Their genitals might seem to be darker in colour, and, while their breasts are growing larger, their testicles are shrinking. Stiffness and pain in some of the joints will be dismissed, by the young of both sexes, as belonging to old age and therefore transient — until, one day, they find that the once fleeting discomfort is now persistent and has become a constant agony.
Loss Of Body Hair
The passing of time will bring, perhaps, the first signs of sudden- or maturity-onset diabetes which might grow progressively more resistant to insulin. By then, the male victim might have become concerned about the fact that he seems to have less hair on his chest and his legs are as smooth as a woman’s; he is losing his eyelashes. In common with many female sufferers from the disorder, he becomes aware that his memory seems to be failing; he has periods of extreme confusion, is depressed, and is frequently irritable to the point of being downright quarrelsome.
His wife — who is beside herself because she can find no explanation for his lack of interest in her — concludes that he must be having an affair but dares not question him because experience has taught her that he will fly into a rage. Worse still, if she is sexually active and has concluded, as one woman wrote, that her husband is “over the hill,” she may seek solace elsewhere.
Perhaps one of the most tragic effects is that of testicular atrophy, which is present in about 25% of male patients. Loss of libido may often antedate the other clinical manifestations of the disease. It seems that diminished sexual function is a relatively frequent finding in young subjects; men of all ages appear to experience this, however.
I did not realize that this was the case, until the first letter I received in which my correspondent confided “my sex life has gone to hell!” was followed by numerous others, worded differently but expressing the same sentiment. The loss of body hair, which all who suffer this find so distressing, is related and is due to pituitary involvement. Usually the hair grows back to some extent after removal of storage iron, but it is scanty. I have seen men, after nearly ten years of phlebotomy therapy, still with hairless legs and hardly more than fluff on the chest.
It Is Not True That Women Are Not At Risk
Women, too, can be affected, as manifested by secondary amenorrhea (absence or abnormal interruption of the menstrual flow), diminished libido, and loss of pubic and underarm hair. Of course, there are many causes of amenorrhea, hemochromatosis being one of the least common, but iron deposited in the pituitary gland does impair the production of sex hormones. Although she may never know this, the young woman who contacted me because she was so profoundly afraid that she would never have children, was one of the motivating forces in the founding of hemochromatosis societies in Canada and elsewhere. Not only was she a homozygote for hemochromatosis (i.e. a carrier of two genes for the disorder), she had been treated with iron supplements!
Note: This article was inspired by, and has been written in response to, the comment left by “Too Shy” after publication of my last article on the subject of HHC.