Hereditary Hemochromatosis anyone a sufferer ?

StevieBanksDiscoPants

StevieBanksDiscoPants

Well-known member
Hi

I have recently been diagnosed with hereditary hemochromatosis, I know it's rare, but wondering if any fellow tangerine family members can offer and support or advice.

Thanks
 
Thanks, it's basically a genetic inherited blood condition where you absorb too much iron, which without treatment ( regular blood letting, potentially weekly initially) to keep iron at a safe level, it can affect your major organs.

Early stages for me, waiting for specialist appointment.

It's just good if you find others to talk to, so wondered if anyone knew about it.
 
StevieBanksDiscoPants said:
Thanks, it's basically a genetic inherited blood condition where you absorb too much iron, which without treatment ( regular blood letting, potentially weekly initially) to keep iron at a safe level, it can affect your major organs.

Early stages for me, waiting for specialist appointment.

It's just good if you find others to talk to, so wondered if anyone knew about it.
Click to expand...
Can’t believe in this day and age, blood letting is the easiest option. Might as well be leeches in jars.
 
StevieBanksDiscoPants said:
Thanks, it's basically a genetic inherited blood condition where you absorb too much iron, which without treatment ( regular blood letting, potentially weekly initially) to keep iron at a safe level, it can affect your major organs.

Early stages for me, waiting for specialist appointment.

It's just good if you find others to talk to, so wondered if anyone knew about it.
Click to expand...
Hi, meet your polar opposite, I don't absorb iron at all so I have to have it forced in and even then my iron levels are about non existent :( Hope you find a solution.
 
There are probably help groups out there, like this one

www.disboards.com

Living with Hemochromatosis??

Fancy word for blood iron overload. Just wondering if anyone else out there has it and how long it took you to get to a maintence schedule and how often do you have to go for maintence. I have been going for phlebotomy for a year (twice a week Jan-June and once a week July-present) and my...
www.disboards.com www.disboards.com

Sounds important to catch it early before permanent damage. A nuisance, but manageable
 
I’m the total opposite too and have to take a load of the stuff to keep iron levels up. The symptoms from too much are remarkably similar to too little though by the looks of it 😳

Good luck with it, looks like it’s manageable, so that’s a plus 👌
 
Cheers everyone... It is manageable with blood letting, just a bit of a shock and unknown for me.
Plenty of groups around on social media and the like, it's just good if there are any others you can chat to.

There's nothing I can do about it, and it can be managed, so I am determined that it doesn't take over my life, just going to take a bit of getting used to.
 
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