John is an off-shore worker from Lewis. He received a letter from Professor Wilson in January 2025, telling him that he has an actionable result in the HFE gene, which can cause the iron-overload disease haemochromatosis. The text below is a transcript from a telephone conversion with Viking Genes in October 2025: My Journey with Haemochromatosis and Viking Genes I’d never heard of haemochromatosis until I received a letter from Professor Jim Flett Wilson about my genetic results. That letter changed everything. I booked a GP appointment in late April 2025, and from there, the treatment journey began. My ferritin levels were sky-high — 2000!Now, I’ve always been a man of action. Heights don’t bother me, I’m not claustrophobic, and I’ve worked offshore for nearly 29 years. But needles? That’s my one phobia. It’s irrational, I know, and I’m embarrassed by it. My uncle was the same, he’d pass out at the sight of his own blood, and he was a butcher! Turns out, I was holding my breath during blood tests, which caused me to faint. A nurse figured that out during my regular hypertension checks.Managing haemochromatosis has been tough, especially with my needle phobia. The staff at NHS Western Isles Hospital in Stornoway have been incredibly patient and supportive, helping me get my ferritin levels down. It’s hit or miss, but they’ve looked after me well.I’ve also had other health challenges, arthritis in my fingers, which I first noticed while playing the bagpipes. I’ve been playing since I was nine, and when my “F finger” stopped hitting the right note, I knew something was off. The doctor confirmed it was arthritis. I’ve also dealt with fatigue, but with everything going on, my wife passing away two years ago, a torn meniscus in my knee, it’s hard to say what’s caused what. Before all this, I was a Commercial Vehicle mechanic and then moved offshore in Oil Exploration and I really enjoyed the work. But I’m grateful I responded to Viking Genes’ letter. Without it, I’d be unaware of this iron-overload condition. Now, my whole family has been tested, my brother and sister are clear.When I was told my liver was at risk, I had an ultrasound. The mention of cirrhosis was a wake-up call. I’m a moderate drinker, just a glass of wine or a wee dram of whisky now and then, but the idea of dying the death of an alcoholic was sobering.I joined Viking Genes not just for the health insights but because of my deep interest in Norse heritage. I’m a qualified tour guide on Lewis and recently started my own business. In Gaelic, we call Norsemen “Lochlannich.” My village, Bragar, has Norse roots, as do many others nearby. Years ago, my wife jokingly bought me a t-shirt that said, “I have Viking blood running through my veins.” Turns out, she wasn’t far off, I did a DNA test that showed 60–70% Norse ancestry. Even a doctor once commented on my heavy bone density, saying I was “of Viking stock.”Since my wife passed, I’ve adjusted my work life. I now job-share with a neighbour, working two weeks on and eight weeks off for a Norwegian company called Odfjell Technology and they have been incredibly supportive through all my personal and health challenges.In the Outer Hebrides, it’s predicted that nearly 500 people in our small population will carry the haemochromatosis gene variants. Screening the community is vital. A nurse recently told me she didn’t understand how I was still functioning; it’s something I’ve lived with unknowingly for years.I’ve got a long journey ahead to reach the maintenance stage, but I’m grateful for the knowledge, the support, and the chance to share my story. If it helps even one person get tested or feel less alone, it’s worth it.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 John 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 John, support the Viking Genes Hebrides fund This article was published on 2025-11-14
