thread: Haemochromatosis

  1. #1
    Registered User

    Apr 2009
    Cowra, NSW


    My finace has haemochromatosis, a genetic blood condition which means he has 200 times more iron in his blood than normal, he needs to be bled (have 500 mL of blood drained every 2 months) and he cant eat too many green vegetablles or red meat.

    I found out that my sister and mother are also carriers of the gene, but dont have it full blown like my fiance.

    I was tested, but do not have it.
    But doctor was still concerned as to whether the baby may get it or be a carrier.

    does anyone know more about this?
    I dont think the baby can be tested for the disease, however wouldnt there be traces in my blood if my baby did have it.
    Im not sure if it can be detected in young children, as my fiance didnt know he had it til he was 14 years old

  2. #2
    Registered User
    Follow Pandora On Twitter

    Jan 2005

    if its genetic they should be able to test for it.
    A firend of mine has this as well, but hers is not as severe as your partners sounds, she manages to control hers throught diet 90% of the time and doesnt need to have blood taken.

  3. #3
    Registered User

    Jul 2007

    Hi there I have it and my dad is a carrier my brothers and mum are not.

    During pregnancy my OB checked my iron a few extra times but nothing else.

    I dont currently have anything done for it years ago i went to a Dr who wanted me to have blood taken on 6 monthly but his nurse was hopless at getting my blood so i only went once and had to go back a week later as she couldnt get it and never went back again.

    I asked DS pead and she wasnt 100% sure so rang the children's hospital, he has been given a referapl to the hematology clinic at the royal childrens hospital when he is 11 months old not sure whether they will do bloods or what then will update in June after appt.

  4. #4
    Life Subscriber

    Jul 2006

    I have it also. There are two genes that are responsible - for simplicity, I'll call them gene A and gene B. So we all know you get two genes from each parent - so normally to have haemochromatosis you have gotten the "dodgy" gene A from both mum and dad OR you have gotten the dodgy gene B from parents. In my case however my mum has neither dodgy gene herself or in her family, but my dad is a carrier for both gene A and gene B. Not everyone who has just one dodgy A and one dodgy B will have symptoms, but some, like me, do.

    So this can come from just one side of the family. Basic genetics give you the odds - most likely in this case it is only gene A or gene B that is in the family - but you can probably check on that if your DH has had genetic testing. In that case, baby would need to get the dodgy gene from each of you - so that's a 1/4 chance of having haemochromatosis and a 1/2 chance of being a carrier.

    This isn't necessarily a bad thing. Females don't tend to suffer too badly as they naturally lose iron anyway. I need to have regular bts to be monitored, but I have never needed to be bled. With males it is more serious, but it still usually takes years for iron to get to dangerous levels, and as you know that it is in the family you will be able to have the child tested at the recommended age, and can then monitor if need be.

    FWIW, neither of my DS's have been checked yet. It is something I will probably have to do, but my GP is aware of the condition and hasn't seen the need yet. HTH.

  5. #5
    BellyBelly Member

    Nov 2004

    hey there
    i am a carrier, but not a sufferer- only have one of the gene's.
    My mum and sis have both, but do not suffer from it yet.
    My nan had it and it was discovered when she was in her 70's. She used to have to let blood every 4-6 weeks. In the end as she got older - she didnt have it done anymore, and actually her iron count started to go backwards as she got to her mid 80's

    she died last friday aged 90 years- so it didnt really impact her life that much.
    Its is a very treatable condition, esp for women who get rid of the iron whilst they are menstruating all by ourselves. I havent bothered to get my kids tested as my DH would have to have both genes for them to have a chance to suffer from it, but they could be carriers. Will tell them when they get older, but not concerned now.
    hope this helps

  6. #6
    Registered User

    Apr 2009
    Cowra, NSW

    she died last friday aged 90 years-

    sorry to hear.
    Sounds like she had a long life but