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Haemochromatosis gene

2 replies

justcametomind · 20/03/2024 00:56

My husband and I have one single copy of the H63D haemochromatosis gene each. I understand that means a 25% chance of one of our offspring having a double copy and possibly loading iron. How important is it to raise this with a doctor at this point? Would they do anything about it now with an under 18? My children are male teen and female tween. I guess in all honestly I'm more concerned for my son, as I know he won't have the benefit of periods to reduce iron levels which I know gives some protection. Has anyone had a child tested for this? How important is it to look into this now?

OP posts:
Unseenentity · 20/03/2024 09:21

There is a document online called "GP Quick Guide to Genetic Haemochromatosis", which advises no testing under 16 and then a consultation with the young person about whether they would want to be screened. I would mention to your GP, they would probably refer to haematology/genetics services locally rather than undertaking that consultation themselves but that's just a guess.

Notsuchacleverclogs · 20/03/2024 09:37

Haemochromatosis runs in my DH's family. As far as i know, none of them have ever been tested as children and my understanding from DH is that it doesnt often develop to the point of requiring treatment until later in life anyway. My DH got tested in his mid 30s after two more close family members in their 60s got to the point of needing treatment - GP referred him to the hospital, he had an appointment with a doctor and then the blood screening tests (not the actual dna test I think). His levels were borderline high so he was advised to avoid taking any multivitamins with iron in and return if he developed any further or worsening symptoms. So i think if you are worried, the GP is probably the first point of call and see what they advise?

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