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Old 07-07-2008, 02:52 PM
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cindylee cindylee is offline
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Hereditary Hemochromatosis

Hereditary Hemochromatosis,,better known as Iron Storage Disease..

It was 3 yrs ago one of my older sisters found out she had it she was 50yrs old at the time,,she had been really sick and 4 doctors were on her case trying to figure it out,,then one doc noticed her high iron content in her blood and did a DNA test to see if she had Hemochromatosis,,,she did,,so once they lowered her iron levels she slowly began to get better...
If you have hemochromatosis, most people don't find out until they are middle age..cause by then the iron content in your blood has gotten too high and it starts to deposit in all your major organs and cause serious problems..
I have 8 siblings, and as it turns out once my sister found out she had it,,her doctor gave her letters for each one of her siblings to take to their own doctors so that each one of us could have our DNA tested.
Now to the reason I am posting this,,,I am lucky I am 10yrs younger then my sister and have learned to manage my eating habits so that I have a low iron diet. But the problem with this disease is for the most part it goes undetected,,,When I got the letter from my sisters doctor, I then when to my doctor whom told me I didn't have hemochromatosis, he said my iron levels are all OK,,at which point,,I said look how can you sit there and tell me I don't have it, you have not done the DNA test for it, (I was already having some of the symptoms my sister had had) And demanded the test,,(it is Doctors proticol to test any patient whom has a first blood relative with this disease) which I had to point out to him,,also I wanted to know right away so I could start maintaining a proper diet and that I had 3 daughters whom also could be at risk,,,So yes I have the double gene for the disease and each one of my daughters are carriers...
Another reason it goes undetected is as in my sisters case,,the doctor did tests, and he found she had liver problems so stopped there and tried to treat that problem ,,when meds weren't working he did more tests,,oh now she had heart and kidney problems,,then lung problems,,but after each one of these diagnosis,,he would leave it at that,,,she was very sick for at least 5 yrs,,,until they finally found the cause, hemochromatosis,,the iron levels in each one of her major organs was causing major problems.
So far our of all 9 of us,,there are 6 of us with hemochromatosis and 3 of my siblings are carriers...
It is one disease that is not commenly thought of these days, and more often over looked.
Here is a link to the Canadian Hemochromatosis Society page,,

Information about the symptoms, diagnosis and treatment of hemochromatosis.
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