Kenneth's story

Kenneth is an NHS health practitioner on the Isle of Benbecula. 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:

 

I’m an advanced practice practitioner originally from the Isle of Lewis, now living and working on the Isle of Benbecula. I work in a small 16-bed hospital, bridging the gap between primary and secondary care, everything from minor injuries to home visits. My background was as a paramedic, and over time, I’ve evolved into this broader rural healthcare role.

Back in January 2025, I received a letter from Professor Jim Flett Wilson. It revealed that my DNA sample showed actionable variants in the HFE gene, indicative of hereditary haemochromatosis. My ferritin levels were around 770, which was quite high. Because of my clinical background, I already knew about haemochromatosis and its implications. It’s surprisingly common, especially in our region, but often goes undiagnosed.

Two of my extended family members were diagnosed with haemochromatosis. Another family member, who was identified as a carrier, didn’t pursue it further or pass the information along. That’s not uncommon, many people don’t realise the importance of genetic screening until symptoms appear.

Once I started treatment, I was undergoing venesection roughly every 10 days. Initially, my ferritin levels dropped rapidly, about 100 points per session. But then things plateaued. Life got in the way, summer holidays, work, and the frequency of my treatments slowed. Now my levels hover around 160 to 180, and my consultant wants them below 100 before we shift to a maintenance phase with quarterly blood tests.

I’ve not made any major dietary changes. I don’t take iron supplements, and my diet isn’t particularly iron-rich; black pudding is a rare treat. So, it’s puzzling why my levels aren’t dropping further.

One thing I’ve noticed is how venesection affects my running. I’m a recreational runner, marathons, half-marathons, six runs a week if I can manage. But after a venesection, I’m absolutely wiped out. My Garmin watch shows my resting heart rate usually sits around 41–43 bpm, but post-treatment it jumps by 10 points or more. It’s all theoretical, but I wonder if my body is compensating, maybe producing more iron or absorbing it more efficiently because of my activity levels.

The nurses who manage my venesections have remarked on how unusual my pattern is. Most of their patients are older and symptomatic, and not typically athletic. There’s no data on how physical activity interacts with iron metabolism in haemochromatosis, but my case seems to suggest something’s going on.

I remember a race in early July. I couldn’t complete a 10K the day after a venesection. The following week was rough too and ran sub-par. But after leaving a month between treatments, I ran closer to my level again. My body metrics confirmed I was back to normal. It was a striking difference.

Thankfully, I’ve had no signs of organ damage, liver scans and other tests have come back clear. 

I’ve not experienced joint pain or swelling, which I know some other volunteers have reported. So far, I’ve been fortunate.

As for why I joined Viking Genes, it was curiosity, really. I’d done an ancestry test years ago, and I’ve always been fascinated by family history. Our family has deep roots in the Isles, eight generations within the same 40 square miles on both sides. When I saw the Viking Genes study advertised at the local petrol station, I thought, “Why not?” I didn’t expect to hear back, but I’m glad I did.

I think screening for haemochromatosis in the Outer Hebrides is a sensible idea. It’s prevalent here, and within NHS Western Isles, we even have a dedicated tab for managing it in our internal system. Yet, it’s not well known in the community. Screening is simple, inexpensive, and could prevent serious complications down the line. Given the geography of our islands, early detection could save people from costly travel and missed work. It would empower GPs to intervene early and manage the condition proactively.

For me, this experience has been a blend of professional insight and personal discovery. I’m grateful to be part of the study, and hopeful that stories like mine can help others catch it early and stay well.

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 Kenneth 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

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