Mairi, from Harris, had no symptoms at all. As part of the Viking Genes return of results programme that started in 2023, Mairi received a letter from Professor Jim Flett Wilson, telling her she has an actionable finding in the HFE gene, which can cause the iron-overload disease haemochromatosis. My Viking Genes Journey: Discovering Haemochromatosis Before It Became a Problem My name is Mairi, and I’m from Harris. I spent forty years as a maths teacher on the mainland before retiring about seven years ago. After retirement, I moved to Harris permanently, building on my grandfather’s croft with my sister. My family roots run deep here, my mother and paternal grandmother were both brought up on the island, and I have first cousins living next door, along with many more cousins scattered around. Life here is peaceful, and I was enjoying retirement, surrounded by family and the familiar landscape of my childhood visits.I decided to join Viking Genes after seeing a post on Facebook. With three grandparents from Harris and one from Uist, I fit their criteria. It was an easy way to contribute to research and, if anything important came up, I’d be notified. Saying yes to actionable findings felt right, not just for myself, but because contributing to medical research could benefit others, too. Before my diagnosis, I had never even heard of genetic haemochromatosis. There’s no known history of it in my family, at least, not that I’m aware of. It’s possible someone may have been misdiagnosed, but as far as I know, I’m the first. Looking back, I’m surprised at how little I knew, especially since, after talking to just a couple of people, I realise how common it actually is in my area. That made me realise there’s a real need for better educational awareness, not just among the public but especially within GP surgeries. I believe it’s essential that all doctors here are aware of genetic haemochromatosis, so they can recognise the signs, like persistent tiredness, because it’s more prevalent than many realise.Women, I learned, are somewhat protected from the consequences of this condition due to menstruation, while men aren’t. Many of the severe cases I read about involved men who were only diagnosed later in life, with iron levels far higher than mine.When I was diagnosed, I actually felt physically well. I was fortunate to be well looked after by the Western Isles Hospital in Stornoway. They referred me for an ultrasound and arranged a telephone consultation with a liver specialist, since advanced haemochromatosis can affect liver function. Thankfully, my liver was fine.Following his advice, I booked an appointment with my GP and had a blood test done. The results showed a significantly raised serum ferritin level and a high transferrin saturation. After fasting and taking a second test, my iron levels were even higher. I was quickly referred to a day clinic for haemochromatosis. I’ve now started a treatment schedule involving regular blood donations to manage my iron levels. It’s a relief to know that I caught this early, before any symptoms appeared or damage occurred.At first, I went to the clinic every two weeks for venesection, with between 200 ml and 450 ml of blood removed each time, followed by blood tests. My ferritin and saturation levels were high, my saturation was around 57, and they wanted it under 50. Progress was slow, but after several treatments, my levels started to improve. The process wasn’t easy. Each visit took up most of a day. It was exhausting, but I was grateful for the care I received and the chance to manage my health proactively.I also received advice about my diet, especially regarding vitamin C, which can increase iron absorption. I stopped taking supplements and became more mindful about when I consumed foods high in vitamin C.If I hadn’t received a letter from Viking Genes, I might never have known about my condition until symptoms appeared. I’m glad I could pre-empt any serious consequences. My diagnosis also prompted my two sisters to get tested. One of them is married to an Irishman whose sister also has haemochromatosis, so their family was already aware of the risks. Thankfully, both my sisters were clear, and as far as I know, I’m the only one in my family with the condition.I want to emphasise that I pursued these tests and treatments solely because of the Viking Genes genetic testing. Without it, I might have gone years without knowing I was at risk. I’m thankful to the team for identifying this condition while I was still asymptomatic. Their work allowed me to take action early and avoid future complications.I hope my story helps raise awareness and shows just how powerful genetic research can be — not just for science, but for real lives. 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 Mairi 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 So we can help people like Mairi, please support Viking Genes Hebrides fund This article was published on 2025-11-05
