I have this hereditary disease called hemochromotosis which is basically an upload of iron in the blood. I have not personally been affected by this disease, but my mom has. I am only at a 20% risk for being affected by this because only my mom was a carrier, and not my dad...but my mom was affected full blown because both of her parents were carriers.
She has an enlarged liver caused by the upload of iron in her organs, and it also brought on diabeties. She also has cushings disease, and hormone problems caused by this disease.
Just wondering if any of you out there have this disease, and if so, how does it affect you?
My best friend is Irish and has this. It is very common in the irish gene pool, her doctor told her that research has shown that it is an acquired benefit because the diet, environment in Ireland is very low on iron. Unfortunately it becomes a liability when you are getting enough dietary iron. The prognosis is better when you find out about it early in life. She has been advised to donate blood twice a year and that, so far has kept her levels of iron close to normal. Hopefully this will minimize the damage it can do, and she is hoping to avoid the complications as long as possible. Good luck with it all, Sera
It is very important to continue giving blood, and not let your iron level get high.
This runs in my family also. I have 3 relatives with this, one deceased because this caused cancer. Probably one other relative had it also, and was not diagnosed back then.
Hereditary Hemochromotosis can be tested if you suspect that you have this blood iron overload in your family history. It is actually a mutation of genes. There are different types of mutations from what I have read. My 3 sisters and myself all have the H63D mutation (Homozygous). None of us have any current health problems because of the mutation, but have our iron levels checked. My Aunt and one cousin both have the same mutation, however my my other 4 cousins are positive for the H63D Heterozygous gene. The Heterozygous does not have the actual Hemochromotosis, but carries the gene.
You can ask your doctor to test for the following:
genetic Screening and DNA Mutation
hi i was diagnosed with hemochromotosis 2yrs ago i give a pint of blood every week until my iron levels are down at the moment they must be fine as i am only get blood test for the iron count and i havent been called back to give blood yet. i was at the hospital last week to give a blood test so at the moment im waiting for the result. i found out i had it through a routine blood test to see if i had diabetis which i found out i had. when they told me i had this blood diesease i was so scaredi thought i was going to die b\c i never heard of it in my life. i still dont know if it was inherited or not as my mum and dad are separated. the docter advised me to get all my sons checked he reckons it would be more severe in boys because they dont have periods. 2 of my sons got checked and they are carriers. the other lad didnt get done yet. its frightening when they tell you that you have this rare disorder but thank god it can be controlled. good luck
I've had high ferritin since April and I don't know why, It seems I might have a insulinoma but my ferritin is at 490 so Im wondering how high your families has been. I know it can go into the thousands but they say I don't have what you have, not yet. Email me at [email]REMOVEDt[/email], Id like to know if you want to let me. Thanks.
Last edited by Mod08; 09-13-2008 at 07:58 PM.
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