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Haemochromatosis: When Blood Donation Is Just What The Doctor Ordered

April Lloyd

(CW: Images of blood, needles, and medical procedures.)

April Lloyd

Ever wondered what it’s like to give blood donations on prescription? Honestly, up until the last year, I certainly didn’t. Now I’m on orders to donate for my health.

When Blood Donation Is Just What the Doctor Ordered

I couldn’t help but laugh at the irony of blood donation, rolling up my sleeve last Halloween to give vampires a pint of the good stuff.

But let’s get this out in the open: blood donation is a beautiful thing to do. It saves lives, my mum’s and my husband’s included. That’s one reason I donated blood at university. The second is that I’m deathly afraid of blood.

After all, what better means of facing your fears than popping into a blood bank?

“But never mind the biccies: I was there on doctor’s orders”

So there I was, in Liverpool St. Paul’s donation centre on Halloween, joining volunteers as they lined up to give fresh pints of blood to those in need. Beds were full, which is hardly surprising given the amber alert surrounding low blood supplies. Nurses gave out blood-red drinks to hydrate willing donors. The biscuits beckoned, promising sweet rewards once the deed was done.

But never mind the biccies – I was there on doctor’s orders. I was born with type 1 genetic haemochromatosis.

Haemochroma-what?

I won’t deny the name is certainly a tongue-twister. Haemochromatosis is an almost supercalifragilistic medical condition. The long and short of it is my body is greedy when absorbing iron from food. I was diagnosed in September 2022, after a decade of being a “hypochondriac” and “whinging” about aching joints, irregular periods, and discoloured knuckles.

What is Haemochromatosis?

Haemochromatosis (HH) is a genetic disorder causing the body to absorb excessive iron. Iron is necessary to live, as this nutrient feeds and sustains our cells. However, those with hereditary haemochromatosis absorb four times as much iron as we should.

Your body has no natural way of depositing iron other than menstruation, so the excess is transported from your blood to major organs and joints. So if there’s one thing I can thank my period for – it’s for lowering my iron level.

The symptoms of haemochromatosis are often overlooked or misdiagnosed, but haemochromatosis is extremely common, especially in the UK. Without treatment, haemochromatosis takes its toll. When your body absorbs too much iron, as many people with haemochromatosis do, you develop iron overload.

Haemochromatosis is often referred to as a ‘stealth disease’. This is because, in the early stages of iron overload, symptoms appear largely generic:

But, as it progresses, haemochromatosis can develop into much more distinct symptoms:

The age and gender gaps for diagnosis are significant. Cisgender men and transgender women statistically receive a diagnosis in their early 40s. Meanwhile, haemochromatosis is often left undetected in cisgender women and transgender men.

Left undetected, iron overload can be fatal. You cannot develop or catch it – it’s all in your genes. You also cannot fight off haemochromatosis through diet alone. That said, eating healthy and taking out foods rich in haem iron is helpful.

How common is haemochromatosis?

Haemochromatosis is not rare. Nicknamed ‘The Celtic Curse’, haemochromatosis is the UK’s most common genetic disorder. It affects at least 380,000 people in the UK and even those numbers are considered conservative estimates.

According to NHS records, just 5,000 individuals in the UK hold an official diagnosis. Also, haemochromatosis is not always on a GP surgery’s radar and is not always included in medical training.

There are different gene pairings associated with haemochromatosis. Each pairing comes with its risk of overload. There are thousands of potential combinations, but these four are the most common:

Image courtesy of Michelle Gordon on Pixabay. Image license can be found here. 

Despite these low numbers, the NHS reports at least 1 in 150 people have hereditary haemochromatosis in England and Wales, and nearly 1 in 92 people in Ireland and Scotland.

At least 1 in 8 people in the UK carry one of the defective genes associated with haemochromatosis. Ireland, once again, hits the ground running with around 1 in 5 individuals carrying a defective gene, with the C282y gene being particularly dominant.

“I had been experiencing iron overload for a decade”

But once again, these are likely to be conservative estimates. Investigations are underway to test the condition’s prevalence in Gwynedd and Birmingham. Interestingly, in my home city, Liverpool, genetic tests were sent out to the region in November last year, as Irish ancestry is common and access to medical support can be sketchy. There is also growing pressure to carry out routine testing in Northern Ireland.

Treating my haemochromatosis

My diagnosis meant I had to become my own self-advocate and my doctor’s new teacher. For example, even after my diagnosis, my doctor chalked down my symptoms to my mental health issues when I was 17. When I contacted the charity, my doctor and I had the chance to speak to Haemochromatosis UK’s specialist nurse, Diogo.

Looking through my iron profile, we concluded I am compound heterozygous and had been experiencing iron overload for a decade.

The good news is haemochromatosis is not costly when appropriately treated and diagnosed early. Compared to drugs or pharmaceuticals, haemochromatosis is remedied through phlebotomy or bloodletting.

Haemochromatosis has no known cure, but since it is treated through phlebotomy, the blood can be donated and put to good use. Haemochromatosis blood was thrown away in the past, but now, with the proper checks in place, people can donate their blood through the National Blood Service.

“My family… due to misinformation, concluded this was a ‘minor’ condition”

The best part is that blood from haemochromatosis carriers can help people with other conditions. Not a drop goes to waste, and those 20 minutes in the chair give someone else a chance to recover and live. It’s a win-win for both parties, in my book.

Secondary treatment has involved taking a hard look at my diet and what I eat. Vegetarianism means I consume relatively low haem iron on a regular basis. Still, I have since discovered a large portion of UK cereals and vegan meats are iron-fortified, making the quest to balance my health tougher than I imagined.

What could be better?

If I could wave a wand and do things differently, I would ask for earlier testing and greater recognition for haemochromatosis. I grew up knowing about anaemia and the consequences of low iron, but I never learned why too much iron could also be harmful.

Weeks after my diagnosis, I told my family, who read online regularly and, due to misinformation, concluded this was a ‘minor’ condition.

But on the contrary, it is not.

Image courtesy of Ahmad Ardity from Pixabay. Image license can be found here. 

When my symptoms show up and I wake up feeling awful, I have to remind myself that I’m one of the lucky ones. I’m female, 32, and diagnosed early. Most women with haemochromatosis only get diagnosed when they’re in their 70s and facing liver failure.

But I must admit, it is funny. I remember galloping out of first aid classes in school at the mere mention of blood. Now, I must give blood every three months for the rest of my life to keep myself healthy.

You know what they say, don’t you? Bloody typical. 

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Featured image courtesy of qimono on Pixabay. Image license can be found here. No changes were made to this image. 

Hello! My name is April, as I am sure you already guessed. I come from the Wirral and work for JournoResources as an Editorial Assistant. You will most likely spot me in a TK Maxx store looking for crab bells.

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