‘It’s one of those feelings you just can’t beat’: One haemochromatosis patient on donating blood

WHEN KARL MACKEY was in a bicycle accident four years ago, he had no idea his life was about to change, but not for the reasons you’d expect.

After undergoing a series of tests in hospital, it became clear that he has hereditary haemochromatosis, and had been living with it for over four decades.

A disorder in which the body absorbs too much iron from the diet, Ireland has the highest rates of hereditary haemochromatosis in the world – approximately 1 in 83 of us are predisposed to develop it.

For Mackey, it wasn’t an obvious diagnosis, but it did make sense in retrospect:

Looking back it did affect me – I was constantly tired, even if I had gotten 12 hours sleep. But I just put that down to the way I was, I didn’t think anything of it.

Treatment of the disorder involves therapeutic phlebotomy – the removal of blood at regular intervals. And thanks to a recent change in blood donation rules, those with haemochromatosis could potentially make up around 10% of the national blood supply.

In practice, this change means that instead of attending their local hospital and potentially being charged an in-patient fee, patients can now just come to their local blood donation clinic and have their ‘discarded’ blood be used for potentially life-saving transfusions.

It’s a rule change that impacted Mackey personally too. Shortly after he got diagnosed, he actually tried to donate blood at the D’Olier Street clinic in Dublin but because of the rules at the time, it wasn’t possible for him to do so.

The news that he could donate kickstarted a brilliant habit that Mackey is yet to break: “Once I heard I could, I started donating blood and I’ve gone back every three months since I started – it’s on my phone and in the calendar.”

He calls the change “absolutely fantastic”, and shares the blood from people with hereditary haemochromatosis can actually be even better for some patients who receive it.

“My sister was diagnosed shortly after me and had to have so much blood taken at that time”, shares Mackey. “It was such a waste because they say that iron-rich blood is particularly good for certain patients like those who have been in an accident.”

And what’s different about the actual donation process when you’re a hereditary haemochromatosis patient? “It’s the same as anyone donating blood, there’s no difference. It takes about 20 minutes to do.”

For more information and support on haemochromatosis email [email protected] or call 01 8735911