Hemachromatosis

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Groundhog
Groundhog
Jan 2022
10:32am, 4 Jan 2022
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Groundhog
I have a friend who has this hereditary condition and know of another colleague who has it. Hemachromatosis causes the body to retain excessive iron and it can cause all sorts of problems with effects on various organs. It's treated by regular blood donations but it is still a very debilitating disease with people often experiencing periods of extreme exhaustion.

My friend Steve recently had an exercise test and although his heart is ok and lung capacity is too, his VO2 max is well below 30. He can get extremely tired with even limited exercise.

However he wants to try and improve this. Does anyone here have any experience of hemachromatosis and being able to take exercise to improve fitness?
HappyG(rrr)
HappyG(rrr)
Jan 2022
11:40am, 4 Jan 2022
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HappyG(rrr)
Never heard of that one, sorry, fingers crossed for your friend finding a way to exercise. G
PenW
PenW
Jan 2022
11:49am, 4 Jan 2022
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PenW
Hi GH
I have heard of this though have no experience.

I would say more generally when building up exercise:
He could find out his baseline I.e. what he can do fairly reliably even if it is only a few minutes of low intensity exercise then build very gradually keeping it within his tolerance levels. This is an approach called graded exercise which has been used with fatigue. (He could look up graded exercise for ideas - graded exercise has had a lot of controversy in relation to treatment for chronic fatigue syndrome/ME but it is at its basic level fairly sound - finding what someone can manage and very gradually building this without going over someone’s tolerance limits.)
Pacing is also helpful with fatigue - managing activity levels so as not to overdo things.
PenW
PenW
Jan 2022
11:50am, 4 Jan 2022
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PenW
He could ask if a doctor or physio could guide him with this.
Flatlander
Flatlander
Jan 2022
3:50pm, 4 Jan 2022
2,333 posts
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Flatlander
I learned a bit about haemachromatosis in my work but I have insufficient knowledge and no experience to be able to offer meaningful advice.
Having written that though, PenW's suggestion does seem sensible and has a sound basis.
Velociraptor
Velociraptor
Jan 2022
4:00pm, 4 Jan 2022
55,794 posts
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Velociraptor
There are a couple of active Fetchies who have haemochromatosis and who will hopefully pop along with their expertise.
Ally-C
Ally-C
Jan 2022
6:34pm, 5 Jan 2022
1,455 posts
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Ally-C
Loads of folk I know from school have it, the Irish disease. Being from the West of Scotland lots of my friends have Irish ancestry.
westmoors
westmoors
Jan 2022
9:06am, 6 Jan 2022
5,601 posts
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westmoors
I have nothing specific to add, but PenW's suggestion is what I would advise to anyone new to exercise.

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About This Thread

Maintained by Groundhog
I have a friend who has this hereditary condition and know of another colleague who has it. Hemachromatosis causes the body to retain excessive iron and it can cause all sorts of problems with effects on various organs. It's treated by regular blood donations but it is still a very debilitating disease with people often experiencing periods of extreme exhaustion.

My friend Steve recently had an exercise test and although his heart is ok and lung capacity is too, his VO2 max is well below ...

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