Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
After reading some of these posts, I wonder whether the early deaths in my husbands family have been due to H.. - my husband died at 62, very suddenly and many of the people in his family died the same way. They havnt really found out why yet, which is why both my sons had blood tests and general tests at my wishes after their fathers death. My younger son was discovered to have H....
But this wasnt discovered in the post mortem and there was never any talk of this? John didnt have more than the usual aches and pains, though he obviously had the gene - can anyone shed any light on this? Can you have this and not suffer a lot of health issues until the age of 62 - and would this not have been discovered at the post mortem? I really want to find out more as my three nephews say they would rather not be tested - Johns sister died at the age of 60 six months ago. Could any of this be caused by H... - would be soooo glad of some advice on this
I suppose I should have put this on the advice column!
But this wasnt discovered in the post mortem and there was never any talk of this? John didnt have more than the usual aches and pains, though he obviously had the gene - can anyone shed any light on this? Can you have this and not suffer a lot of health issues until the age of 62 - and would this not have been discovered at the post mortem? I really want to find out more as my three nephews say they would rather not be tested - Johns sister died at the age of 60 six months ago. Could any of this be caused by H... - would be soooo glad of some advice on this
I suppose I should have put this on the advice column!
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I have been here before, a long long time ago and now I am back.Forgive me for not just saying what I want to say,even under a triple dose of antidepressants it is still raw and seeping and I am hesitant at revealing it as at least under the bandages around my heart I don,t have to look at how raw and wounded.My child was cleaved from my heart by his own actions. my child of ten,turning eleven...
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theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
It ABSOLUTELY could have been part of your husband's death! Hemochromatosis is diagnosed by DNA, but also by taking the FAMILY'S medican history. And one of the things they look for is a family pattern of SUDDEN, EARLY, unexplained, fatal heart attacks. My grandfather keeled over while planting an orange tree in his back yard. He was in his 50's. My mother had her first, very severe heart attack at right about 40; she was lucky and pulled through. My uncle had one about 60 or so. I started having heart problems when I was in my early 20's. No one (doctors) could figure out why. When you mentioned something to the effect that the post mortem showed no hemochromatosis (HH), I kind of wondered how they knew that. HH is not something that is ever routinely tested for. Not even when your alive. I can't imagine that a post mortem would indlude a HH DNA test unless specifically indicated, suspected, or requested. I could be wrong, but . . .
My family is still in denial. My sibligs refuse to be tested, for a variety of bogus reasons. I certain my mother has it, but she lives with one of the siblings who won't be tested -- or get her tested either. All the denial in the world won't make it go away.
I began noticing fatigue in my 30's. It got progressively worse. Although the fatigue became debilitating, medically speaking I appeared healthy as a horse. In retrospect, I see now that other "minor" symptoms were really HH: arrythmias, sky-high cortisol levels, decreasing immunity, really messed up circadian rhythm/sleep patterns and periods, easy bruising and bleeding, depression, etc., etc. But as far as tests went, I was always just normal.
As for your nephews, do continue to urge them to get tested. HH kills people. All the time. And often without notice, warning, or fanfare. And the sadest part is that it is SO very treatable!!! You can live a virtually normal life if you just follow the doctor's simple directions.
My best to you and your family,
Judy B.
But I suppose my nephews would not be in so much danger - my sister in law wasnt tested either, but she had a blood test with revealed leukaemia so I am a bit confused. Do they automatically test for this, do you know....it is all very complicated....