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View Full Version : Hemochromatasis! Could you have it too??



Babzz
12-01-2009, 12:55 PM
http://www.cdnhemochromatosis.ca/youtube.php

This is a very informative link that I thought I would share with you all.
This condition is very common and not often diagnosed.

www.toomuchiron.ca (http://www.toomuchiron.ca)

NewCasa
12-01-2009, 01:10 PM
Very interesting article. Thanks for posting it Babzz.

Babzz
12-01-2009, 01:38 PM
I am the contact person here in the Sault for anyone newly diagnoised. It can be scary at first knowing you have this but easily "fixed". It does not go away, but finding out you have it early can save your life!

Andre
12-01-2009, 01:43 PM
it's an ugly death

Xzavia
12-01-2009, 02:25 PM
Informative video, thanks Babzz! I know someone diagnosed with this, he's been having blood withdrawn routinely to try and get his counts down. Last I heard he was at a better level so he had to wait and get tested again before having more taken out. When they found out about him having this it explained so much of what he'd been experiencing (side affects).

NewCasa
12-01-2009, 03:21 PM
I am the contact person here in the Sault for anyone newly diagnoised. It can be scary at first knowing you have this but easily "fixed". It does not go away, but finding out you have it early can save your life!

Are the quacks...ummmm...docs in the Sault aware of this as a possible diagnosis? I'd never heard of it before you posted this.

Babzz
12-01-2009, 07:53 PM
Informative video, thanks Babzz! I know someone diagnosed with this, he's been having blood withdrawn routinely to try and get his counts down. Last I heard he was at a better level so he had to wait and get tested again before having more taken out. When they found out about him having this it explained so much of what he'd been experiencing (side affects).

I am in the process of being "de-ironed" right now..
Its a pain in the butt, has to be done though. I am at the hospital once a week and blood work once a week. Been doing this since august and levels are starting to drop now.

Most of the older doctors and some younger ones too, do not know anything about it.

Its not a regular iron test you need to have done to be tested for it.
You need something called total iron binding capacity ( T.I.B.C.)
and
SATURATED iron level. Not just iron levels

Babzz
12-01-2009, 07:54 PM
Are the quacks...ummmm...docs in the Sault aware of this as a possible diagnosis? I'd never heard of it before you posted this.

lots do not have a clue about it... sad as that is

NewCasa
12-01-2009, 07:57 PM
lots do not have a clue about it... sad as that is

Hmm...be useful to know which ones DO know about it. Of course I guess it wouldn't be impossible to educate one. Ok - forget I said that. What was I thinking?

mags
12-01-2009, 07:58 PM
I know of a family that has 2 members who have been receiving treatment for 15 yrs and 32 yrs. There are Dr.s in town who are quite familiar with this condition.

kitca
12-02-2009, 12:11 AM
my hubby mentioned this to me awhile back. he was saying how he has to be careful not to eat too much food high in iron. i was shocked, i hadnt realized there was such a thing. i am so much the opposite, i have no iron. i had injections 2 years ago, and i think im coming due again.

Babzz
12-02-2009, 10:26 AM
Does your husband have it Kitca??
He should be getting phebs( blood taken out of his body) if he does!!!
Is he at least a blood donor?

icecapp
12-02-2009, 11:17 AM
it sure is a scary thing.. I know it put a rumble in our family, the person we know gos once aweek to have blood drawn unless they call and tell him not this week due to low levels, and every week to have it tested...

my husband was tested for it and is clean.

b&aMom
12-02-2009, 12:35 PM
I learned more (had heard a bit about it before) about it about a month ago...one of the specialty channels had a medical mystery show on, and the poor guy went from a marathon runner to hardly being able to walk. Took years before he was diagnosed, but now he's treated and back in marathons.