Living with Haemachromatosis

green_dub_girl

I am 24 years old, female and feeling really healthy and fit. But last week I was diagnosed with Haemachromatosis, which essentially means my body overloads on Iron. Both my parents carried the gene so I went for the test, I realise now to "rule out" the idea that I might have the disease. I really got a shock, and dread not only living with the disease for my whole life but also potentially passing to any children that I have. I am very upset about it, although I know with treatment it should be manageable.

1 in 5 Irish people carry the gene for the disease, so I'm guessing there are 1000s of boardsies who have it (whether they know or not). I would love to hear people's experiences, and how they deal with the condition.

rugbug86

Hi,

I'm waiting for test results back about it. They reckon I'm definately a carrier but I've got elevated iron levels (39% last time checked) with high hemoglobin (~18 g.L last time) which is ridiculously high for a female, y'no with that whole bleeding once a month thing.

I know of people who have it and living with it isn't difficult - they have to go donate blood every so often (depends on the levels) and that's it. Keeps it in check!

trishawisha

Hi I was around your age when I was tested for haemachromatosis(sp..) after my father got diagnosed. I tested positive for both genes. Because I was/am not displaying any symptoms the disease has not yet presented itself. I was then and continue to be on the anaemic side. After getting diagnosed with Multiple Sclerosis last year the haemachromatosis is a non issue, but I do get my blood checked regularly. The thoughts of passing this disease onto my children is it could be alot worse.
I dont mean to diminish your upset about it, it can be serious, but because you're young and aware, you should live a perfectly healthy life with no ill effects.

luckyfrank

Hi i have it , i decteced mine by accident having a blood test for palpitations, a few pints of blood a year and you'll live a normal healthy life,

Pixywish

Hey, try not to get too stressed about having it. Me and my sis were diagnosed years ago as having it years ago. I've never had any probs with it and my sis has just had to do the bloodletting thing once or twice when her levels were pretty high. For some reason she said she gets cramps in her legs when her levels are high. Not sure if that happens anyone else or if it's just her bein weird though!!!

I understand the thing about bein worried about passing it on to kids. I've no idea whether my partner may be a carrier for haemochromatosis, but I try not to worry about it, especially since he has Crohn's and I have Fibromyalgia, so we've got a real melting pot goin!!! Haha..

The best thing you can do anyway is to keep an eye on your iron levels by getting blood tests every so often just to make sure everything's ok and try not to worry about it too much. I know getting a new diagnosis of any kind can be kinda scary, but maybe talk to your gp if you've any questions at all. I'm sure there's prob an Irish Haemochromatosis organisation of some kind too. Not sure off hand. Hang in there anyhows!!!:)

Abby19

http://www.haemochromatosis-ir.com/index.php?pagetag=news&NID=1013

If you are based in Dublin there is an IBTS clinic run in Stillorgan, they can even use your donation. Afaik this is the only one where your blood can be used, but there are many other clinics where you can be treated.

rainshowers82

My Mom has it and i am a carrier . My Mom has no side effects as such from it . It is mad the amount of people who are carriers for it .

gmf1024

My wife's maternal cousin had tested positive for the condition and so she went for a test merely as a precaution. Her GP told her that, based on her blood tests, her iron was high but she did not have the condition. Two days later, based on the genetic test, she was told she did have the condition. Since then, a half cousin on her paternal side has been diagnosed with it. She doesn't really mind having the condition as she says it allows her to dodge eating all the foods she hates e.g offal. She also says if she is to have a "potentially fatal genetic disorder", this one is fine as she gets monitored, there are no side effects from the treatment and she was diagnosed well before any potential difficulties. It doesn't really impact on any aspect of her life except for routine annual monitoring at the moment which is a very small price to pay. That said, she is doing all she can to raise awareness of the condition.

degausserxo

My sister has it - she doesn't have to give blood though, it's mainly controlled through diet. No red meats, leafy dark greens like spinach, and she has to watch how much vitamin c she takes in because apparently it helps your body to absorb iron.