Volunteer Stories

Read our volunteer stories.
Powerful stories that show that our research can make a difference to the lives of our volunteers. And find out what inspired some of our volunteers to join Viking Genes.

Viking volunteer John

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.

Viking volunteer Alan 2

Alan from Skye, an engineering manager, was looking forward to semi-retirement, working the family croft, but declining health cast a shadow over his future plans. Then Alan received a letter from Professor Wilson, telling him that he has an actionable result in the HFE gene, which can cause the iron-overload disease haemochromatosis.

Viking volunteer Mairi

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.

Viking volunteer Kenneth

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.

Linda volunteer banner

Linda from Orkney had not felt well for a long time. 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.

Viking volunteer Hunter

In March 2008 Hunter was diagnosed with Idiopathic Dilated Cardiomyopathy, a disease that causes weakening of the heart muscle. The cause wasn't certain, but a letter in 2024 from Prof Jim Flett Wilson of Viking Genes revealed that Hunter had inherited a variant in the TTN gene, which put him at risk of developing dilated cardiomyopathy.

John Arthur banner

John Arthur is a volunteer in VIKING I. His powerful story started with a Viking Genes return of results letter from Professor Jim Flett Wilson, telling John Arthur he is a carrier of the Whalsay BRCA2 variant, which can cause breast and prostate cancer in men.

Jacqueline

Jacqueline worked as an administrator with us on the VIKING I study from 2013-2015, but is also a volunteer. As part of the Viking Genes return of results programme, Jacqueline found out in 2024 that she was a carrier of a TTN gene variant, which can increase the risk of developing the heart condition Dilated Cardiomyopathy.

Viking Genes volunteer Laura

Laura started to develop life-changing symptoms that led to the diagnosed of a rare genetic disorder called Wilson disease that requires actionable variants in both copies of her ATP7B gene (one from her mother and one from her father) for the disease to become active. Laura is keen to stress that screening will help identify carriers and has taken positive action by becoming a fundraiser for Viking Genes.

Jasmine

In 2013 Jasmine had a a life-changing event caused by Long QT Syndrome, which is an inherited heart problem that affects how your heart beats. Jasmine later found out she is a carrier of a LQTS variant and is keen to stress that screening will help prevent early death by finding carriers before they become ill.

Christine

Christine has lived her whole life in Shetland. She is a volunteer in VIKING I. As part of the Viking Genes return of results programme, Christine found out in 2023 that she was a carrier of the Whalsay BRCA2 variant, which can cause breast and ovarian cancer.

Ingrid

Ingrid is a Viking Health Study - Shetland volunteer. When she heard we were looking for new volunteers for VIKING II, she shared her story, showing the benefits of receiving actionable genetic results.

Kiera is a volunteer in our study, but she also spent some time working with us! Read about why she chose to be so actively involved here.

Dot came to visit us on Friday 13th March 2020. It might be an unlucky day for some but she enjoyed her visit and shares her experience here.

Andrea was originally born in Edinburgh and her family has a very interesting history related to our studies. Read more here.

Garry has two grandparents from Orkney and, with the help of relatives, is discovering more about his family tree. Read his story here.