Alan's story

The text below is a transcript from a telephone conversion with Viking Genes in October 2025:

When Professor Wilson wrote to me and said I had the HFE gene variant, I was really glad I sent my sample off. That was the first time I heard about haemochromatosis. Then it got me thinking: OK, maybe that's why I’ve got sore knees and ankles, and all sorts of arthritis. I’d put it down to something like old age. 

In the letter from Prof Wilson, he suggested I get in touch with the NHS. When they did a blood test to check my ferritin level [ferritin is a protein that stores iron, and its level in the blood indicates your body's total iron stores] - I think it should be below 50 – mine was 550 and may have been higher at one time. 

Haemochromatosis is completely new to me. I never heard of this before I received a letter from Viking Genes. When you're feeling lethargic, you get tired, you say, oh, take more iron, you don't have enough iron. But with haemochromatosis it’s the opposite, you naturally overload with iron. When I told people at work about haemochromatosis, no one had heard of it. It's one of those stealth-like diseases in a way; it creeps up on you. 

So, when I heard that my levels were 550, I thought, okay, that's fine - let’s get it down. I'm 59 in January, but I feel very active. I get out and about and have a young family. So, to be honest, I would never have gone down this road if it wasn't for that DNA result. So, get yourself checked out! 

I had my third venesection yesterday, which went very well [venesection is a form of blood giving – the removal of red blood cells that contain iron, meaning your body will use up more iron to replace them, helping to reduce the amount of iron in your body.] I'm working full time, so I just nipped out of work. I go to the local hospital at Broadford to take my pint off. I sat there for half an hour and then back to work again. So, it's not affecting my life. I'm delighted because it's a very easy cure for haemochromatosis, just take a pint of blood every fortnight, maybe for the six months or something, depending on how things go. 

My joints have already started feeling better, but I don't know whether that's me subconsciously thinking they are or not. My father, he was really bad with arthritis for the last few years, from retirement he couldn't really do too much, he didn't have a very active life because of the swollen joints and people just put it down to arthritis and rheumatoid arthritis. But it could be this buildup of iron in your joints, because they said it's on your organs and then it's also on your joints as well. It's such a simple cure that will give you much better quality of life. I also had an ultrasound and a fibroscan to see if it is building up on the organs. It's lucky enough it's not. 

NHS Broadford Hospital on Skye have been fantastic throughout the process. I know the hospital quite well because my brother was treated there. He sadly died of cancer. My other brother recovered from cancer, so he was treated there. My sister died of cancer as well in the early 60s. So, that was my biggest concern - all cancer and not this iron-overload disease.

The hospital recommended I don't take orange juice, cut down on vitamin C. Because these are things that help the absorption of iron. They also recommended not to take cereal with my breakfast because this is enriched in iron. No alcohol, drinking more teas and coffee, because the tannins in teas and coffee stop the absorption of iron. I'm trying to modify my diet to do my best to try to help as well. A complete opposite of what you’re taught as kids – eat your greens, eat your fruit, have your five-a-day.

I've always been fit and active, and I've never been in hospital since I was a kid. But for the last couple of years, I've been getting up to saying, oh, my knees are painful, my ankles are sore, and they say, oh, its arthritis. And my health was going down and down and down, and I couldn't do the things that I did five years ago. I was getting worried because you come up for retirement. Do you want to enjoy retirement? I've got tons of stuff to do. So, I think I'm really, really lucky that I found out now. I’m now spreading the news, I tell everyone about it: “get yourself checked out!” 

I'm talking to other members of my family. I've got two boys, they are teenagers, so once they're 18, I said, get checked out as well. Particularly as men are more affected by the disease than women.

When Viking Genes gave me the option to receive actionable genetic results, it was an easy decision to say yes. There's cancer, heart disease and other stuff in my family. It was mainly just to find out, is there anything I can do now to give me a better quality of life? It is really important to know. Because I'm very proactive. I'll change my diet. I'll do whatever is needed. It will benefit me to have a better quality of life. I've still got the family croft, where I have sheep, and whenever I retire, I’ll need to be fit and active to do all the labour. 

I support the idea of screening the community in Skye and the Outer Hebrides for haemochromatosis. It’s such a simple test. A lot of people do a DNA test anyway for ancestry, so why don't we test everyone in Skye and the Outer Hebrides for haemochromatosis? I don't know why. The benefits would surely outweigh the cost. 

Hopefully out of this publicity we will see the DNA test made available within the community for HFE. It's not invasive at all – just a swab or a bit of spittle. 

Haemochromatosis is more common in the Outer Hebrides and in Skye than anywhere else in the UK. One in 62 people carry the same gene variants as Alan and are therefore at much higher risk of the disease. 

If you’d like to read more about this research, visit the link below.

The landscape of hereditary haemochromatosis risk and diagnosis across the British Isles and Ireland > 

https://viking.ed.ac.uk/landscape-hereditary-haemochromatosis-risk-and-diagnosis-across-british-isles-and-ireland