Linda's story

Linda had not felt well for a long time. She is a volunteer in ORCADES. As part of the Viking Genes return of results programme that started in 2023, Linda found out that she has an actionable variant in the haemochromatosis (HFE) gene.

Linda first took part in the Orkney Complex Disease Study (ORCADES) in 2006, and was later traced by researchers to tell her she had haemochromatosis.

She said: “By then, I hadn't felt good for a long time but nobody seemed to know what was wrong with me. When I found out I felt like there was light at the end of the tunnel.”

For Mrs Milne, a mother of three, a major side effect of her “nasty” illness was a loss in balance.

She said: “I had been out for a walk with my mum and dad and daughter and I felt so dizzy and horrible. For around nine years, I was not right. I couldn't stand in queues. I would hang onto walls.

“Sometimes, I could collapse. I had nine years of misery. I think folk thought I was putting it all on so I never said much about it. I had this terrible tiredness. The other major side effect for me was itchy skin.

"I had to fight this for so long that I think it made me a stronger person. I wouldn't give into it but it was really, really tough.

Linda volunteer

After diagnosis, Mrs Milne started venesections to draw blood from her body and reduce iron levels. She described the process as "extremely awful to begin with", although the process did improve as her iron levels started to come down.

"My doctors at Skerryvore Practice and the Balfour Hospital have looked after me so well. They have been amazing.

“I feel like I am one of the lucky ones. Around five days after the first treatment, I felt like a new human being."

Treatment is ongoing but Mrs Milne knows exactly when her iron levels need adjusted.When she was younger, Mrs Milne's mother knew when her daughter was unwell given a change in her eyes. Her eyes would improve following menstruation and then get worse again over the course of her cycle, she said.

Mrs Milne's family line on Orkney goes back to the 1700s with many family members suffering poor health over time. Her great uncle died aged 32 with other relatives leading short lives. One of her three children also has haemochromatosis.

Mrs Milne said looking after her health was now part of her life.

 

This story first appeared in The Scotsman (online) on 9 Feb 2025

Visit our 'Viking Genes in the News' page to find more news and media coverage for our haemochromatosis research.

 

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