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  • My diagnosis of Hemochromatosis and 10 years on.

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    Old 10-20-2015, 07:41 AM   #1
    DomBez77's Avatar
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    DomBez77 HB User
    My diagnosis of Hemochromatosis and 10 years on.

    About 10 years ago I thought that wonderful old showbiz fraud had got it right; 'You've never had it so good!' I had a lovely girlfriend, played in the best band West Yorkshire had to give and had (nearly) all of my hair. The trouble was, at 27 the obligatory rock n roll lifestyle was inevitably catching up with me and after a good 10 years of more than a few nefarious indulgences I began to feel a bit squiffy.

    I remember being in the works canteen, as usual, failing miserably to pitch in with answers to our daily dinnertime Mirror crossword when suddenly I felt what I can only describe as a panic attack, followed by a strangulated, numb pain in my abdomen. I rushed out and told the gaffer that I felt unwell and drove myself home. I got to bed and truly thought I was about to join the great pantheon of 27 year olds who'd slipped away. The truth was I was a factory worker who happened to play in a band and was ashamed of myself and petrified that I was going to leave all my loved ones behind through my selfish hedonistic pursuits. Not 'Rock n Roll'. Just pathetic.

    When I finally woke I knew I had to get a grip, bite the bullet and do the thing a lot of blokes dread and get myself to the Doctors. Quickly. After many questions ranging from family medical history and my own lifestyle the G.P. took a blood test and told me to stay off the drink. For a month! The fact that I could barely remember having more than 3 days without a drink spoke volumes about my own dependancy with drink so I was more than complicit with this order.

    I wanted to know what the hell was going on with my body. Incidentally, the G.P. expressed some concern that my father had only passed away the year earlier aged 53 from alcohol related complications and knew how that, although alcoholism itself wasn't hereditary, the propensity for obsessive and compulsive behaviour leading to addiction certainly could be.

    After the month had passed I felt incredibly cleansed and fitter than I had for years. I returned to the doctors for further blood tests, pretty sure that the problem had been taken care of and that a clean bill of health would be given. A few days later the G.P. rang and said he'd like me to return for further blood tests. Now I started to worry. Apparently, my ferritin levels were still high. Normal iron levels in adult male in the UK can range between 12-300 nano grams per millilitre of blood. Mine was 900.

    It was hoped that after a month off alcohol this level would drop considerably. Sadly this wasn't the case, so back to the G.P. for further tests. By this time I was on first name terms with most of the staff and my arm was beginning to resemble a pin cushion. Not long after, the G.P. contacted me and told me I was showing tests had proving I had a genetic disorder called C282Y Hemochromatosis.

    Well, if you're going have a disorder you might as well have one with a name that's impossible to pronounce or spell. The Doctor explained that this inherited disorder meant that my body was absorbing excessive amounts of iron. A man with Hemochromatosis can accumulate 20 grams of total body iron by age 40 to 50 (the normal iron content for the body is 3 to 4 grams). The excess iron deposits in the joints, liver, testicles, and heart, which causes damage to these organs, and causes signs and symptoms of hemochromatosis.

    As I was already displaying symptoms of iron overload and it was vital to start procedures to eradicate this excess ferritin. The plus side was there were two easy ways around this. Firstly, a change in diet avoiding iron rich foods and alcohol as it promotes the absorption of iron. The second was a series of venesections whereby I would attend the hospital for blood-letting sessions, as if donating blood, where the iron level would be monitored in regular weekly intervals until a safe level was reached.

    There was still one question that needed answering and that was if the disorder was a hereditary genetic disorder, the implication being that both my mother, and my father would have it. Unfortunately it was too late for my dad to be tested for the gene, but my mother had the test which, as expected, results showed positive for Hemochromatosis. Thankfully her iron levels weren't excessively high as women over the years can naturally filter iron through menstruation, though she still has the occasional venesection to keep ferritin levels to a minimum. Although my father was a heavy drinker he did seem to deteriorate rapidly and one can highly suspect that his own untimely death was a combination of his lifestyle coupled with the Hemochromatosis.

    10 years down the line I still visit the hospital for venesection sessions, but perhaps only 2-3 times a year; ferritin levels now being controlled by changes in lifestyle which I would have balked at 10 years ago. Of course I have the occasional blow out- life's too short to live the lifestyle of a monk but I eat and drink sensibly, excercise regularly, quit smoking 3 years ago and have even taken part in 3 half marathons. I'm a full time musician playing in an award winning wedding band and teach a local over 60's Ukelele group which requires me to be on my mettle constantly.

    Having Hemochromatosis, for me is a mere blip in my biology. After seeing family and loved ones go through serious illnesses and excruciating treatment I actually feel that my diagnosis of Hemochromatosis was a blessing. In the last 10 years it has helped shaped the person I am today and made me keep a check on my health; something I may have otherwise, shamefully taken for granted.

    Last edited by moderator2; 10-20-2015 at 08:09 AM.

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