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Genetic Haemochromatosis

how is everybody doing today?

Yesterday I was diagnosed with Genetic Haemochromatosis, the second incurable condition I’ve been diagnosed with in the last two weeks. I’m just wondering if there is anybody else who has been diagnosed with this and MS?

The treatment for it is to remove some of my blood every too weeks until my iron levels return to normal so I’m thinking this will make the fatigue worse, just wondering if anybody else has any experience with this?

G

Hi, I too have been diagnosed with hemachromatosis, my levels are creeping up but at the minute I am just being watched. The treatment as you say is blood letting or phlebotomy to use the technical term. I have not had a formal diagnosis of ms, although alot points to it. I will add this post to my favourites and update if and when I get a diagnosis. Not sure if there is a link, it will be interesting to see if any other msers reply with the same condition. Lou x

Hi,I dont have either of the above, but whenever I see the word geneticmentioned, my ears, or should that beeyes` prick up!

I have a genetic disorder which mimics PPMS.

I imagine having your blood changed so often will take its toll on you.

Good luck hun and look after yourself, yeh?

luv Pollyx

So far I’m the first in my family to be diagnosed with this so we’re not sure where it has come from or perhaps where I came from lol. All of my brothers need to be checked for it and so will my children at some point.

it’s only now today that I’m wishing I asked more questions yesterday. I’ve just been reading the haemochromatosis societies web page and it says the excess Iron can cause fatigue, so actually it might help my fatigue when I’m treated for this

loulou - I’ll keep you posted on how I get on

Pol, I’ll need to make sure I’m staying well on top of all my vitamin levels, I’ve been advised not to drink too much by the haemotologist but I’ve not been drinking anything for the last 3 months now. I’m also not supposed to eat red meat on top of red meat but I’ve cut it out already to reduce my saturated fat intake.

I’ve also been having high blood pressure, not sure if that is do do with going through the process of getting diagnosed or if it’s a diet/heredity thing - both my mum and her mum have high blood pressure so it’s in the family

My friends husband has this. He was really ill until they diagnosed it. Now he has it under control and just watches his diet. He still lets himself have an occasional steak but basically now he knows how to control it it doesn’t really bother him.