we have just found out our son has both genes

Your son is fortunate to find out early but, he probably won't overload for awhile. All he has to do is get appropriate phlebotomies and avoid alcohol and he should be able to protect his liver and other organs.  I'm glad he was checked. None of my brothers or sister will have their iron checked which is so sad to me.

Hi Rachel...

Of course it's not nice to know that your son has inherited Haemochromatosis...BUT...he's gonna live a normal life. It's great news that you know now....in the end, you'll be so happy that you found out now. All you gotta do now is monitor his ferritin level, and it will need to be kept at about 50 or so. To keep it at a safe level he will need to be a blood donor, and go maybe 2-4 times a year for the rest of his life...maybe even less than that. That's the good news...as a donor he can save lives, meanwhile keeping himself healthy.

Maybe don't let him eat as much red meat....make sure he drinks loads of milk and tea when eating as these two things prevent iron absorption...especially milk and calcium. Eat loads of eggs with food...stops iron absorption. Don't cut out foods really...just have milk, eggs and tea with your food.

Monitor his ferritin, and have phlebotomy treatment from time to time....and that's it...he will live an ordinary, healthy life. My ferritin level was 2000....luckily I had no organ damage, but have joint damage in my hands. I had blood taken every week for a year to get my ferritin level to below 50. It is now. Now I'm a blood donor....I go about once every 6-8 weeks at the mo...but might be going less often in time. I'm living a normal life now with those dietary tips...I do have some beer and wine at weekends...so didn't even cut that all our as I have no liver damage. I'm also training for a half marathon at the moment. So, all is well. You have nothing to worry about. If you're in the UK, phone and join the Haemochromatosis Society....they are brilliant and very supportive and helpful. I'm running the marathon to raise money for them. Keep in touch...all will be well. Mike.

I have both genes too - Only son but it looks like my dad carried both as Mum as been tested and shes fine - Think if you catch it in time and maintain it then its fine and also watch what triggers a fluctuation in iron levels - Mine seems to be Vitamin C particuarly fresh orange  

It is good that he has found out so early.  He is only 14 and still growing so don't reduce his red meat and iron intake from food, or else he won't grow up big and strong.  Just avoid foods that have iron supplementation, e.g. bread, cereals.

You don't say what his ferritin iron level is and I don't expect him to loading iron yet.  My son is also compound heterozygous C282Y/H63D, however both of his parents are homozygous C282Y and homozygous H63D so he could not miss out.  At 22, his ferritin iron was 772, and he was tall and slim.  He started with weekly venesections.  Once he moved out of home, as young men generally do, he got slack about it and that has caused issues with his health.  Keep your son well informed and educated on these issues with the hope that he does not go astray later on.

When you son is old enough (18?), get him in the habit of donating blood every 3 months, and don't mention the H word.  The blood is definitely not harmful, just that Blood Bank is sensitive about it and will make him jump through some hoops.  Just go as an ordinary volunteer donor.  All of you can do that also.  Make it a family thing.

There are dietary things he can do once he starts loading iron, e.g. drink tea/coffee/milk with meals.  These help reduce the uptake of iron.  Never OJ or other high vit C drinks, vit C tablets with meals and these increase the uptake of iron.  Any foods with calcium in it help reduce the uptake of iron, e.g. dairy, yoghurt, cheese.  Have these as desert with meals, instead of sugar and starches, as the last two also increase the uptake of iron into the liver, causing fatty liver.

I am glad he is not one of the many who find out too late, once damage has been done to their health.

Best wishes

 

ty so much for your replys yes we already know mention the h word to blood banks and they go nuts crazy its high iron blood would have though tha was a good thing lol but yes ty guys for all your advice bee n a great suport he will is devistated he can teat to many oranges as its his favorite fruit